Posted 11/05/2025 Are there specific people whose thoughts, opinions and/or view of me matter more? Why? This is a tricky question. Because the right answer is, I only care what people I love and people who love me think. And it’s true. I shouldn’t care what anyone else’s opinion is. But I’m not there yet. I mean, I don’t care what strangers think. Or even people I may see on a regular basis, like parents of my bonus baby’s teammates. But you know what I struggle with? People who knew the old me. For instance, all the people I went to college with. Or the people I always used to run into when I would party a lot, when I first moved to Dallas. Those people knew me or knew of me when I was fun and fancy free. And I miss those days. Sometimes I feel like, if that’s how you knew me, that’s how I want you to remember me. But, why do I care about their opinion? I don’t know. I just do. I want those close to me to know the real me though. The woman who I am today. I do miss the old me, but that’s ok. I imagine we all do. My dad is in his late 70’s. I’m sure he’d love to be 40 again. We’d all wish to be 30 pounds lighter, right? We all miss something about the way we used to be. But, it’s like, I used to run track. Old teammates of mine, probably would have a hard time running around the track today. But they could do it. I can’t even do it if I wanted to. That’s what I miss. The ABILITY. There are some people who I just want them to remember me as able. And have opinions about that. That makes me think of something. I had a job some years ago, at the same company, but a different facility. There was a man there named Billie. I used to go to Billie’s cubicle and talk to him every day. He was an older man, and he reminded me of one of my uncles. He was a cool guy. Well, I eventually left and changed jobs and I heard through the grapevine that Billie had retired. Years later, I was in the Target parking lot. I had a grocery cart for balance, and my cane was in the cart. I heard someone calling my name. I looked, and it was Billie! We spoke for about 20-30 minutes, just catching up. The whole time, I could see him watching me. I never let go of the basket. And the basket had a cane. But I never addressed my situation. I subconsciously cared about his opinion. I didn’t want his opinion of me to change. He gave me his email address when he left. Told me to keep in touch. But I won’t. I want him to remember me fun and fancy free. But those close to me, my support system, I want them to know me. And I want to be honest and vulnerable. And their opinion matters to me. I want them to know I struggle, but I keep making it. I am a warrior. I kept so much inside for so long. And I’ve come around. I used to not even want friends, or medical professionals to know the real me or have an opinion. But I have overcome that. So hopefully, at some point I can see myself at a high school reunion with my walker. That day ain’t today though. I’m not there yet. Have I ever changed myself to fit someone else’s view of me? The younger me, I am sure I have. Most people I know have done so. But the person I am now, I don’t think so. I have said time and time again, when I look in the mirror, before I go out, “this is me.” I may have changed my habits, like going out less, But I don’t change myself. I don’t even know how. And as I come more and more into acceptance of my disability, I am more accepting of myself. And want to be accepted for who I am by those around me. And in my last post, I talked about not wanting to see people from my past, because I want them to remember the old me. That is true. But if they did see me, for more than 30 minutes, outside in a parking lot, they would just get what they get. I wouldn’t change anything.
Everyday Life How has your routine or lifestyle changed (if at all)? My routine is very different now. I spend a lot of time at home. Fortunately, I like home. And I like my little family: Michael, my bonus baby (he’s 15, but he’ll always be the baby) and myself. I find little projects to do around the house, I cook, I watch tv, read, exercise (sometimes), and work. I have a masseuse who comes once a month to give me massages, and a hair stylist who comes every few weeks. I do venture out sometimes. I do a lot of grocery shopping, and errands, if the place isn’t real crowded. I may go to an appointment or a lunch or dinner. Recently, I went to see one of best friend’s little girls at a dance recital. I try to go to school basketball and football games. I even went and got a pedicure a few weeks ago. So I get out maybe 3 times a week, at a minimum. That’s a little different because I used to get out a lot. Another thing that has changed is my speed. My life has slowed down A LOT. I move sloooooooooow. I also think every thing out. If I’m going somewhere, I think about the surroundings. What will everything mean for me? I am thinking about weather, and crowds. I have to plan everything out. And chances are, I am early. I hate rushing. I need my slow pace. I don’t do well flustered. And of course, I have new necessities. Before, I cared about my purse, and accessories, and stuff like that. I still need my purse, but where is my cane? My nieces came to visit a few months ago, and my youngest always runs off with my cane. I’m always saying, “bring auntie her cane, please!” I need to make sure my walker is in the trunk. I don’t use it often, but I need to have it in my car. I need a handicap placard if we are in any car besides mine (I have the license plate). I also say, “no,” a lot more now. I don’t like having more than one outing a day. I’ll do two at the most. Maybe. I need to sit wherever we are going. And I like to know when I am coming home. I am not staying out all day or even for hours. I am not going to a very crowded place. I am probably not going anywhere after dark. Unless it’s just to take the ride. That may sound like a bit much, but I have learned to protect my peace and not put myself in situations that may heighten my anxiety. Those are the biggest changes to my routine or lifestyle.Posted 10/13/2025 How does the way I want to be seen compare to how I actually see myself? The way I want to be seen directly correlates with how I see myself. There is no misalignment there. There is misalignment with how I am actually seen, I believe. As stated before, I think people who do not know me well, feel bad for me. They wonder what happened. And I think the thing to come to terms with is, I have to let go of wanting those not close to me, knowing my story. People are going to think what they want to. Even those close to you. I have to be ok with that. I know this, but am I there yet? Not 100%. It’s still a work in progress.
Do I want to be admired, respected, loved, understood—or something else entirely? It depends on who we’re talking about. If we are talking about those not in my inner circle, I would say that I ultimately want to be respected. Understood would be nice, but respected is my answer. And I come to that conclusion because “understanding,” takes more time. Someone walking past you in the street doesn’t care about understanding you, and I’m ok with that. It would be nice though. But on the other hand, it takes no time at all to be respectful. Have common courtesy and compassion would be nice. I feel like a person with limitations, just want to be respected, and treated like everyone else. I’m just as smart as you, have what you have and people who love me. I just have a disorder. That’s it. If we are talking about people that are in my inner circle, I want to be respected and understood. And loved, because I love everyone in my inner circle. And who wants to love someone who doesn’t love them back? I choose respect, because that’s just common courtesy. Do not disrespect me. I do not deserve that. And what I said above, still stands. I’ve added understood because if you are in my inner circle, I would think we have put in the time to know and understand each other. I know your story and you know mine. Of course, its all about what we are both willing to share. But the opportunity is there. I don’t have to be admired. If it happens, that’s just an added bonus.
In what ways do I try to influence how others perceive me? I always act, “fine.” I won’t say I’m always in a great mood, but I try not to be in a bad one. I don’t want to be, “the mean lady, with the cane.” If my mood is that bad, for some reason, I stay home. But in all honesty, being “fine” all the time is helpful. I could choose to be in a funk all the time, but what good is that going to do? Now don’t get me wrong, I’m not smiling at everybody, or singing songs. But I’m polite and if I just cried my eyes out because I dropped a glass of water or almost fell in the bathroom, you wouldn’t know. If I have to vent, I tell Michael, or call my dad. And maybe a friend or two. But overall, I try to stay in good spirits. My mind will take in negativity so easily, so I try to only let in the opposite. I work on my mind shift everyday. I want to be and be perceived as “fine.”Posted 9/23/2025 How do your values shape your identity and how you view yourself? I have never even thought about what my values are. Not really. Is that weird? I will pick three. Courage, compassion and optimism. Courage – The ability to do something that frightens you. This word fits me these days. Not only because I think I have it, but because it is something I will continuously have to rely on. And I think everyone needs it. In my situation, I think I need it daily. But that doesn’t mean I use it all day every day. For instance, even though I may have fears about going and navigating the store alone, even though I’ve done it 100 times, I still go. If I don’t, I will have nothing but pop tarts, deli meat and Pepsi in my house. I have to go be an adult and do things even when I don’t want to. You may be wondering what am I afraid of. I’m constantly thinking, “yeah, I did it yesterday…but what if something happens today?” And the fear can be debilitating. But I also have to make the decision to do it anyway. And that doesn’t mean I talk myself into going to concerts or professional football games. I’m not that courageous. But sometimes it takes courage to do mundane things. Compassion – sympathetic, pity and concern for the sufferings or misfortunes of others. Some of the words in that definition are unfavorable, but the definition makes sense. I think I’ve always had compassion. Growing up with my mom helped with that. Now, I’m even more compassionate, and have noticed strangers have more compassion than you think. Here’s a tidbit of honesty, one reason why my anxiety was so high, when I was first diagnosed (and It’s still high). I didn’t think strangers had compassion. So I never wanted to go anywhere without a friend or family. Do you remember when Destiny’s Child was on 106 and Park, years ago, and Michelle fell down (if not, look it up on youtube. Search, “when Michelle fell on 106 and park”)? Kelly Rowland stepped over her so fast. She stayed on beat too. That’s about how bad I thought it would be for me. But its not that bad. At all. Strangers help, ask if you need help, open doors, etc. They even have kind words. On the news, its always shown how awful people are. But there is goodness out there. Optimism – hopeful and confidence about the future or the successful outcome of something. I need to be optimistic. The end. I can’t get out of bed without being optimistic. Being anything else wouldn’t benefit me at all. And I used to be pessimistic. Very much so. But it wasn’t serving me. I can’t fear the worst, about everything. So every day, I have to make a choice. And work on it every day.
Those are three values that shape my identity and how I view myself. What qualities or traits do I most want others to notice about me? I want to be seen how I see myself. I realize now that that answer has changed over time. If I had to answer that question 20 years ago, at 24 or 25, I would have said, “I want people to see me as pretty. And perfect.” That’s how, I lived my life. I didn’t walk around thinking I was Beyonce or anything, but I thought I was cute, and I took pride in that. I was a regular at the nail salon and at the hair salon. I frequented the spa for massages. I went to the mall to buy my size 4’s and smalls. I always had a tidy living space and a clean car. I graduated from FAMU and had a Master’s degree from Texas A&M. I had a good job at a Fortune 500 Company. I traveled. I went out with friends every weekend. I went grocery shopping every Sunday, had the same routine every evening and week. Then my life changed. And ultimately, I had to shift my thinking and priorities. I look different now. My wants and needs have changed. I spend more time with my thoughts now. I still see my friends, I still go out. But I need to go where we are going to be sitting. I get my hair done and massages. But I have found people who will come to my house. I still work for the same company, from home. I am resourceful. I keep going, even when its hard. Because I am strong, I have a bad day, but that doesn’t stop me. Because I am resilient. I started using a walker so I can do small task, like go to the dentist, get my eyebrows done, alone. And I travel to go see my brother and my dad. Because I want to hold on to my independence. I am realistic about my situation and find ways to make my life easier. I am self aware. Those aren’t traits that are easily noticeable. But that is how I want to be seen. My life isn’t perfect, but it’s a pretty good life. I’m a bit fluffier (I cant get my leg in a size 4) and I don’t want to do my hair or put on makeup every day, but I’m still pretty. Posted 9/1/2025 How does your past influence the way you see yourself today? I think the way I grew up with the mother I had, influences the way I see myself today. If we are talking about the past. As mentioned before, my mom had ataxia as well. There are different types, and we have the same one. I have a fuzzy memory about the past. But I remember my mom being great. We butted heads a little when I was a teen. She didn’t take crap. I remember her being sick, but that was my home life. I didn’t think about it much. At home. She had a wide gait, when she walked, and her speech was a little off to some, but I could understand her just fine. I remember not liking to go many places with my mom. Nothing against her, but I didn’t like the stares from people. Now that I’m an adult, they are probably curious stares. But as a kid, I just know I didn’t like it. I still don’t like stares now. They make me anxious. Looking back, my mom experienced the same things I do: she may trip. Or stumble. Or hit a door frame when walking in or out of a room. She dropped things. But she never complained. Never. I do not think once she expressed how hard or frustrating life was. But now, being in her shoes, I know she thought about it. Probably even cried about it. Well, let me take that back. I have one memory of my mother being upset. We took family pictures. I was in 11th or 12th grade. The last time we took professional pictures. And my mom was sad when she saw them. She didn’t like her smile. Ataxia can affect the oddest things. For example, it is affecting my eyes now. I open my eyes wide without trying. That day, it was affecting her smile. To her. My mom always looked like my mom, so I didn’t see it. But now, I know what she’s talking about. There are subtle changes. And we can see it. But other than that, she never complained. She was the strongest woman I know. To her, you have to keep going. I remember when her mother passed. I must have asked how she was doing. Her answer was something like, “I’m sad, but the sun is still going to come out the next day.” She was telling me life was still going to go on. And I think she had the same thoughts about ataxia. You can be sad, and defeated, but life is going to keep going. Do you want to miss it, or cope with what you got? Growing up with the mom I had has influenced me today. Imagine meeting your younger self – how would they see you now? My younger self would see that I am happy. Eventually. But I think at first, she would be sad. Sad this is how it has ended up. I think she would be sad that her future ended in a physical handicap. She was never consumed by her physical self, but it was a big part of her life. She took pride in it. She also was a physical person. She took walks, went for runs (sometimes), she ran track, she played soccer, she coached a team for a few years. She was a girl scout troop leader. She went to Zumba, and cycling class. She went to all her bonus baby’s games. She went to the mall and out to eat with friends. She went to parties. And life looks different now. But I’m happy. I have my days where it gets hard. And I spend a lot of time at home. But I love tv and reading and cooking. I love my house. I love my friends and family, and they come visit when they can. I go to some games still to watch my bonus baby. When I feel good. I buy something from Amazon almost daily. I have a little gym setup in the garage. I travel to see my dad and my brother’s family at least twice a year (wheelchair assistance at the airport is nice). I love my little family here in Texas. I still go out to eat. It’s just different. So, when my younger self takes the time to consider all that, she’d see that I am happy.Posted 7/12/2025 If your inner voice were a person, how would they talk to you? Supportively? Critically? If my inner voice were a person, she would talk to me supportively, but also very real. But not critically. In therapy, one of the techniques I learned is self talk. And I use it every day. I have to talk myself off the ledge on a daily basis. The reason is because I have a lot of near accidents. For instance, I may trip. Or stumble. Or hit a door frame when walking in or out of a room. Ataxia pretty much affects the balance. Or coordination. So, I look clumsy, or tipsy, maybe. I drop things sometimes. I basically do things that annoy me. All day. Sometimes its because I’m rushing. I hate to make people wait. Other times, it’s because it’s a day that ends in the letter “Y.” My body just doesn’t cooperate. So anyway, so I won’t get frustrated, I take a deep breath, and talk to myself. “You’re ok.” “Do it again.” “Take your time.” “Julnelle, don’t stop.” You get the picture. Then there is the other side. If I get an attitude with myself, the words are more like, “you got 5 minutes. Then suck it up.” Or if I’m out somewhere and anxiety hits me (it comes at the weirdest and most inconvenient times), and lets say I get nervous about walking to the car, because the ground is wet (I have a fear of falling. Everywhere, but especially in public. And water heightens the fear. I irrationally think I will slip if there is a drop of water), I will say to myself, “then how are you going to get home, genius?” and if I want to do something like call Michael to come help me, I tell myself, “no. He has better things to do than come to Target and walk you to the car.” Now don’t get it twisted, he has saved me before. I remember he came to a gas station before, to help me with something. I can remember, about two months ago, I got a walker. It was a suggestion from a student doctor. He had asked me, what is the hardest part. My doctor is an older guy, and he never asks me that. But recently, students have been sitting in on my appointments, and they ask that. I like it. At that time, the hardest part for me was me feeling like I was losing my independence. I wanted to be able to do things like go to a dentist appointment or get my eyebrows done without having to have someone take me all the time. I wanted to just go. So the walker was suggested. It took me a month to use it. I thought using it was admitting to myself, I needed a walker. I did need a walker. But that’s the thing, having a disability is such a mind fuck. One day, I am confident, and I am able to do many things. Then suddenly, I doubt everything, and want so much help, because I’m scared. So anyway, one day I needed a picture printed out. Mike and I had just moved into a new home, and in our entryway, we have a table with framed photos of our parents and grandparents. I needed to print out a picture of my grandparents. It was on my phone. I thought the easiest thing would be to go to CVS and print it. That would mean using the walker. I tried to come up with any other option. All I could think of was order the picture, from Shutterfly or Amazon Prints, and have it delivered. Let me tell you why that’s stupid. 1. The shipping cost more than the print. 2. I would have to wait for like 7 days. I was getting on my own nerves, at this point. So I told myself, “Take your raggedy butt to CVS, and use the walker to go inside. And print the picture.” The walker was already in my trunk. I was done with my errand in 10 minutes. Sometimes, I need tough love. And I give it to myself, all the time. So, I would say, my inner voice is supportive versus critical. What roles define how you see yourself the most? Friend. Daughter. Sister. Aunt. Girlfriend/Partner. Bonus Mom Those titles are most important to me, and define me. My illness does not define me. It is something I have, but not who I am. It gets in the way of things I can do, to fulfill my roles, but that’s it. Friend – friendship means more to me now that I’m older. Who will always be there? Not to just gossip and kick it. I mean, those things are fun too, but who is really going to be there, and not judge you for not being able to do the things you used to? My friends are like sisters to me. And their kids are my family. So are the husbands. I will always be there for them. I can’t always say what condition I will show up, but I am there. A phone call away, a car ride, or a plane ride. And I will do what I can. And I hope it will be reciprocated, I’m 99.9% sure it will be. Daughter – I love my parents. My mom passed away in 2014. She had ataxia. That’s how I got it. So now, it’s just my dad. There is nobody better than Ed Hamilton. Close, but he’s up there. I can’t describe it, but he is like a warm hug. Even on the phone. I feel like I parent him, more than before, but he’s the best dad. So I do my best to be the best daughter. And he’s a safe place for me. I can say anything. Do anything. And it changes nothing. Sister – I have one brother. He’s an amazing father and husband. And he is an amazing brother. He’s a very busy man, but he will drop anything for his family. And I will do the same. I’m amazed that the knuckle head that was in the bedroom next to me for all those years is a grown ass man. That I would do anything for. Aunt – My brother has blessed me with three angels. My nephew is 14 and my nieces are 5 and 3. They can do no wrong, and they have me wrapped around their fingers. My nephew was around before my diagnosis. But nothing has changed. They are all helpful and don’t make me feel “different.” I guess I’m just “Aunt Julnelle who needs help sometimes.” Partner – Michael. The most change has come from him. I met him in 2016. I was not diagnosed yet. And I was scared to get tested. But he has never left my side. And he’s always there for me. And he’s learned how to be the best partner to me. Of course, he does the man thing. He doesn’t throw stuff away, his socks are everywhere, his shoes aren’t put away, etc. But if I need to hold his hand, he’s there. If I need a hug, he’s there. If I need to cry, he’s there. If I need a ride, and a companion, he’s there. He makes me feel safe. I know it can’t be easy to go from fully functional partner, to 24/7 helper, but he’s doing it. Bonus Mom – yeah, I know. It’s unofficial. But that’s my dude. Always has been. I met him at 5. He’s 14 now. And he hasn’t skipped a beat over the years. He goes with me places, when his dad can’t. He always gives me his arm to hold when walking. He always says “yes” when I need a favor. And with no teenage attitude. He’s just loving. From 5 to now. And I love him like he’s my own. And will do anything for him. I have ataxia, but I am still a friend, daughter, sister, aunt, partner and bonus mom. And no role means more to me. That is not a ranking. I just wrote them in that order on the page 😊Posted 7\1\2025 How do you think others see you, and how does that compare to how you see yourself? I think people who know me well, and deep down, I know those are the only opinions that matter, think I am strong and resilient. And never complain. I have been told from close friends and family. And my therapist. I’ve also been told that I never give up and, I have come a long way. It was not always been this way. But I’ve always fought to get here. Mentally. And continue to grow. I agree. I see myself that way too. I think people who do not know me well, feel bad for me. They wonder what happened. I can understand that thought process. I would feel the same, initially. So I guess I can’t be mad at that. It’s human. Especially if you have empathy. And I don’t disagree with the initial thought, I just think there is more to my story. But I need to realize that everyone is not meant to know my story. And assumptions will be made. I can’t control how others see me. But it’s hard. I would like everyone to know. But I can’t. What parts of yourself are you most proud of? I am most proud of my strength and resilience. I never thought I would be in this place with my diagnosis. I was convinced that if I was ever diagnosed with ataxia, It would be the end for me. I hate to admit this, but I had thoughts of ending my life. Not in depth or anything, and it was a passing thought, but I didn’t want to be strong. I wanted to give up. But the moment I found out, after tears, I got in the car and drove home. Even after my dad insisted on driving. I remember saying, “let me drive. One day, I may not be able to.” And looking back, at that moment, still in the doctor’s parking lot (I hated the doctor by the way. More on that later), I knew I would do everything I could now, until I couldn’t anymore. And I’ve never looked back. I’m not saying some days aren’t hard. Well, they all are, but some days are harder. I struggle. I think about everything. How do I feel today? Am I comfortable walking? Am I tired? Will I use my walker today or my cane? Do I have to leave the house? For how long? How far do I have to walk? Are there stairs? Curbs? Who will help me today? Will it be crowded? Is it raining? Will it rain? Can I stay in the car? And that’s just a short list of daily questions. And everyday I deal with anxiety. I used to be scared to leave the house. What if something happened? But now, I just think of work arounds. How can I prepare for less things to happen. I am still anxious, I’m just learning to trust myself more. And put faith in my circle. And strangers. But I am proud. Proud I’ve made it this far. Proud I’ve kept going. Even after a bad day. I get in the bed, eat, watch tv and sleep. And start over later. But I am going to get up. I’m going to try again. I will not give up. And that makes me proud.Therapy and Psychiatry and Physical Therapy (Posted 6/24/2025) So I went back to therapy. Now my anxiety wasn’t due to, “what if I have ataxia,” it was due to, “I have ataxia. What happens now?” Ataxia feels like your body will not cooperate. It won’t do what you want it to do. For instance, I want to run across a room, but I can’t. I want to stand on one leg, but I can’t. I want to run up and down the stairs in my house. But I can’t. I want to just walk and laugh with my friends. But I can’t. My coordination is all jacked up. I used to be able to do multiple things at once. And I still can, if I’m sitting. But otherwise, I’m concentrating. I don’t want to fall. Or drop something. And another hard part is mourning the old you. I used to do EVERYTHING. Now, not so much. It’s sad, and hard to get used to. I remember asking Michael for a treadmill. When I got it, I was so excited. Weird, I know. But when I got it, I was walking so slow. I was concentrating on each step, and holding on for dear life. After 5 minutes, I called my dad, crying. I was so sad. I used to run on the treadmill! It’s not just the fact that I’m getting used to my new normal, but I’m also missing the old me. At therapy, we talked about how to calm myself in situations that caused me panic. I have some variation of a panic attack maybe once a day. Most are a 3 on a scale of 1-10, but they can vary. It used to take a long time, to calm down. Now, I can do it quicker. It takes practice. I remember I was going to travel for the first time, by myself. I was going to take advantage of wheelchair assistance at the airport. I had a panic attack the day before. It took about an hour to calm myself. Now, I can calm myself in a matter of minutes. And that really means, calm myself to get done with the task at hand. I don’t claim to be “cool as a cucumber,” or whatever they say. At therapy, we also talk about what I’ve been feeling. I find myself putting things into words easier. I know I feel it, but I may have never said it out loud. I can talk freely and she doesn’t look at me crazy. She reminds me of that social media trend, “We listen, and we don’t judge.” We talk about my mom a lot. My mom is the only reference point for this disorder, so I thought my life would be just like hers. Even though the doctor has told me that no two situations are the same. I had to get it through my thick skull that her illness is not my illness. I also went to physical therapy for a few months. I liked it. Not at first though. Again, I would cry. I tend to cry when I feel evaluated. I guess that’s the easiest way to put it. Because I know that I used to be good at whatever you are asking me to do. But now, the response is, “ok…now do this….” And they have a straight face. And they may scribble a note. And it’s like, “ok what? Am I the best or worse you’ve ever seen?!” You feel judged. That’s why I don’t like stares, too. This ain’t the zoo or a freak show, honey. Keep it moving. But I digress. Physical therapy was cool. Once I got comfortable, I could do anything asked of me. Not like run or jump, but the PT exercises. The guy even told me once, he was running out of things for me to do. So I kinda stopped going. Not abruptly, but less and less. Now its been months. I even stopped therapy for a short while. I felt stagnant. I had this new life, and I was making it. I was making the best of a bad situation. And I kept having the same problem. At home, places I am comfortable, I do better. Not great to the average person, but great for me. But as soon as I went outside, I was real symptomatic. I couldn’t figure out why. It’s like a switch would just go off, telling me I wasn’t safe anymore. I talked to my doctor about it, and he gave me a referral to a psychiatrist. At this point, I said the anxiety was the hardest part. I was still taking the Lexapro, but I needed something else. I spoke to a psychiatrist a few weeks later, and told her my situation. I didn’t cry. She understood and pretty much told me I need something for in the moment. I got on something like Xanax. Not specifically, but something similar. To be honest, it helps, but not 100%, every day. But I always have it with me. My next issue, among many, was determining the difference between rational and irrational fears. Let me explain. At this point, I never went anywhere alone. Except the grocery store. I use a shopping cart to help with my balance. Other than that, someone went with me every where. I traveled alone, but there is almost always an airport worker with me, unless I am sitting. But at the doctor’s office or something, someone came with me. I don’t like being alone. I always think an emergency might happen. So I spoke to the psychiatrist about it. We ended up talking about how I’m often scared, unless I have some sort of something to make me feel safe. But were my fears rational or irrational? I determined that walking the mall, is rational. But going into the eye doctor, a small office, with medical professionals…more on the irrational side. It basically wasn’t a medicine thing. It was more mental. In the end, I was encouraged to go back to talk therapy. Which I did. I had taken a few months off, but it felt good to be back. We spoke about my progress and some issues I was still having. There is always something to talk about. Sometimes you say something, and it leads to another topic. Which leads me to something else I wanted to share, besides my story. One day we were talking, and a topic came up, that I had never mentioned before. And my therapist asked me, “Have you ever thought about journaling?” I hadn’t. But I wanted to try it. I heard that it can be helpful. How? I didn’t know. But I wanted to find out. So, I’ve been journaling. It helps me get my thoughts out. And its therapeutic. There is evidence of your thoughts, and how far you’ve come. And I’ve held in secrets for over 20 years, and now I’m ready to stop. Here is my journal.
I want to say something before I start sharing my journal. This is MY journal. With MY thoughts. I’m sharing it because we all think differently, and maybe my thoughts can help someone. Maybe my words can help someone express how they are feeling. I have no idea what my words will do, I am hoping for the best.
Also, I try to be very honest about my thoughts. I also try to be positive. I wasn’t always positive, but negativity just made me feel bad. And I found that dealing with a disability and feeling bad, is not a good combination. And no, I’m not always positive or happy. I have my moments. But I try not to stay in the place of negativity/sadness.
For my journal, I start with a prompt or question/topic. Then I just write what I feel. Ask yourself some of the same questions. How do you feel? It can be therapeutic. ——————————————————————————————————————————- Journaling
Describe yourself in five words Why did you choose each one? Strong – I can deal with tough situations. Even though it is the hardest thing I’ve had to do. Self-aware – I understand my shortfalls and my strengths. I am not in denial or unaware of my world around me. And I adapt accordingly. Resourceful – I ask for help. Eventually. I also try to figure out how I can do something myself, if I can. Independent – I try to do things for myself, if I can. I try not to depend on anyone else, if I can help it. Resilient – I don’t let tough circumstances stop me. At least not for long. I keep going.Headaches So let me try to remember some dates. Loosely. I think I started therapy at the end of 2020. I was going to therapy and taking my meds regularly. I felt “better,” but not good. It’s hard to explain, but in my house, I felt ok. But anything outside of my house, I didn’t feel ok. I would venture out sometimes, but not a lot. Then, I started getting headaches. Bad headaches. 1-3 a day, for like 18 months. They would make me cry because the pain was so bad. So I thought I was getting migraines. No medication, from my PCP, helped. I had a CT scan. They didn’t find anything on the CT scan that would lead to the headaches. However, there was a comment on the report. It said, “Moderate diffuse cerebellar atrophy.” This was in April 2022. Nobody addressed the comment. And I was too afraid to. I remember Michael took me to a follow up PCP appointment. Maybe it was a physical. And we were going over some bloodwork. And I had off the charts creatine levels. We weren’t sure what was causing it, but something was wrong. And I remember at that point, my doctor started asking me to do stuff. Stuff like walk across the room. Look in her eyes. And I had a panic attack and cried uncontrollably. I knew what she was looking for. Signs of anything neurological. Why did I cry whenever this came up? This is a fear I’ve had for 20 years. It was very emotional for me. So my doctor said we would stop, but she wanted me to get an MRI. In May 2022, I had an MRI. I was so nervous. But you know what? My doctor came back to me and said my MRI was normal. On the outside I was in shock. I had been worried, for 20 years, for nothing. On the inside, however, I knew that that was a bunch of bull. Who was the Doogie Howser MF who can’t read an MRI? But I cheered up for a few days. We were still trying to figure out this headache thing, so I had an appointment with a neurologist for another opinion. In the meantime, my second niece was born, so Michael and I went to Denver to see her. My dad came to Denver too. During that visit, I told my dad what had been going on with me. I had never told him my struggle, but since everything came back, “fine,” why not? My dad looked worried, and relieved at the same time. But we turned our attention to the headache guy I was going to see next. My dad actually said he wanted to go with me. He came to Dallas, a few weeks later, and we went to see the neurologist. I brought my MRI scans and told him about the headaches. Somehow we started briefly talking about my mom, and her ataxia, but said I was told my MRI was fine. He said nothing about the headaches. He told me to walk over to him. I was starting to get emotional. Here we go again. He checked my reflexes. He said, “yeah, you have ataxia.” He wasn’t nice. Comforting. Nothing. He said, “let me go see something.” He came back and said, “yep. I checked your scans. I can see it. Sorry.” And he left. He had two students with him. They left too. I cried like a baby. So did my dad. Didn’t this man know this was devastating news? 20 years of fear was realized. And he told it to me like that? I don’t know what I wanted. But not that. When I came out the room, he was standing there. I knew he heard us crying. He wanted to set up another appointment. I said I would just call back. I knew I wasn’t coming back. I did stay on as his patient, on paper. He signed paperwork for me to get handicap stickers, and work from home privileges, indefinitely. He sent a prescription for muscle relaxers (I would periodically get leg cramps). He was fast. When I needed something, I got it. Other than that, he can kick rocks. Asshole. After that, I told my dad, I wanted to go to my mom’s old doctor at Emory in Atlanta. He is the head of Neurology there, I think. And specializes in ataxia. It might be “movement disorders.” It was hard to get on his schedule, but I got it, with the help of a family friend. I go to Atlanta to see him twice a year. My father lives in Atlanta, so I usually take a two week trip, twice a year. One week I’m visiting family in Denver, then I go to Atlanta . Headaches (part 2) So now I have daily headaches and ataxia. Part of me wanted to crawl in bed forever, and the other part of me said I needed to keep going. I kept going, even though I was a mess. I got a cane. It helped sometimes. I didn’t need it at home. When I left the comfort of my home, I felt everything. That’s still the case today. Anyway, I went to another neurologist. I explained everything. He just sat and listened. He said nothing. I was sure I had him stumped. But no. He basically said I had tension headaches and not migraines. He told me to take the muscle relaxers every night. And there is a spot on my neck that holds the tension and pretty much starts the headache. I bought a neck massager and used it everyday. I still use it sometimes now. I read online that anxiety/stress can lead to tension headaches. After about 90 days, the headaches were gone.Therapy I told a friend I wanted to go to therapy for anxiety. I downplayed it. Like it was no big deal. It turns out she was going to a therapist for anxiety too. I didn’t know. So she gave me the contact information, and I set something up for the following week. The week before the appointment, I broke down and told Michael. We had been dating for about four years at this point, and pretty much living together. Covid was happening, so we had chosen my house as our living space. I cried and was very transparent. I said that I had been a wreck for years and I didn’t know what to do. He was there for me. Let me cry and gave me encouraging words. But I knew he didn’t know what to say. And I didn’t expect him to. I had gotten it out for real for real. For the first time ever. Did I feel better? Better that someone knew a secret about me, but other than that, no. Then, I had my first therapy appointment. And you pretty much give the reason for your visit. I word vomited. I cried. I told her about my mother. I expressed how much I loved her, but didn’t want to live her life. I said how I have been tense and nervous for 20 years. I didn’t even know what it was like to be relaxed or calm, 100%. I told her how I was afraid to leave my house. The anxiety was so bad. I would get shortness of breath, sweaty palms, dizzy. My legs would be weak. Sometimes I would try to walk, and get frozen in place with fear. I couldn’t even make it 10 steps from my car, half the time. My ears would ring. And here’s the thing. Two things. 1. Anxiety isn’t just mental. It has physical aspects too. 2. Those physical aspects made me feel like I was having ataxia symptoms. So I was in a constant state of confusion. Was I experiencing ataxia or was I extremely anxious? So my therapist and I first started working on my anxiety. That’s what I came to her for. I don’t even remember those first sessions. I remember being comforted by her in that hour and open to her suggestions of breathing techniques, self talk, reframing scenarios, etc. But once we hung up, I couldn’t do anything to help myself. So the next suggestion was talking to my PCP. Maybe I needed medicine. Something to take the edge off. So I had a video visit with my doctor. I had notes, so I wouldn’t forget anything. I cried. I was getting a lot of emotions out, at this point. 20 years of fear was coming out. My doctor said she could hear the anxiousness in my voice. She told me not to worry. This was not new to her. Even though I felt like the only person to ever experience this. She sent in a prescription for Lexapro. And told me to follow up so we could get the right dosage. Let me tell you something, once we found the right dosage, I was a new person. It didn’t fix the anxiety problem, 100%. But I was able to function. My ears stopped ringing. I didn’t have shortness of breath. My palms stopped sweating. My legs were less weak. I was still in my head and things were still tough, but I took two steps forward. Then the headaches started.My Anxiety I had anxiety. Bad. I remember having it in college, but it could have been before that. Where did the anxiety stem from? I had a feeling that I would get ataxia, like my mother. I remember doing things like walking while balancing a book on my head. Could I still do that? Yes. Good. I was ok. I remember walking and balancing on curbs. Could I still do that? Yes. Good. I was ok. I would do tongue twisters to see if my speech was slurred. Could I still do that? Yes. Good. I was ok. I would run on the treadmill. Could I still do that? Yes. Good. I was ok. I never told anyone I was doing this. This was a secret. When I dated, I would think to myself, “Would he be a good caregiver like my dad?” Each year, the anxiety grew more and more. If I wore high heels, and didn’t walk perfectly, I would get sad. If I went to a workout class at the gym, and couldn’t keep up, I would blame it on my coordination, and get sad. If I was writing, and my handwriting was messy, I would get sad. My mom had messy handwriting. All kinds of things would just make me so upset. But nobody knew. After a while, I didn’t know if I was making my situation worse. What I mean by that is, eventually, it became more difficult to balance a book on my head, walk on curbs, do tongue twisters, and run on treadmills. I could still do it, but not as easy as before. But was all this worrying just making things more difficult? Was I manifesting this, with my negative thoughts? I would try to stop thinking about it so much, but I was going crazy inside. And this went on for years. And when I was about to turn 40, I was a wreck. I couldn’t live like this anymore. But at the same time, I couldn’t bring myself to get tested. If I had it, my life would be over. That’s what I told myself. But I couldn’t even leave my house at this point. My anxiety had gotten the best of me. Fortunately, this was during the beginning of Covid. So I had an excuse to stay in the house. I remember breaking down and trying to tell a person or two. But they said I was fine. It was probably just anxiety. And I believed it. Because I wanted to. But deep down, I knew something was wrong. I’ve always known. But I didn’t tell a sole. But I had to get it out. So I went to therapy.My college and Young Adult Life I went to college at Florida A&M University, in Tallahassee, Florida. I enjoyed myself. I majored in business because I thought I should carry a briefcase like my parents did. I’ve never owned a briefcase. I partied and traveled. I studied a little too. I met friends that would become life long friends. After college, I moved to Dallas, Texas. For no real good reason. Except that I didn’t have a job yet, and thought I could find one in the DFW metroplex. And I had an older cousin who lived here, so I thought I could stay with her. I found a job rather quickly. Then a much better job a year later. I still work for that company today. I’ve made good friends in Dallas. One of my college roommates eventually moved here and that was great. I went to brunches, lunches and dinners. I went to professional sporting events, parties and concerts. Then weddings and baby showers. I traveled a lot and dated a lot. I bought my first house, cars, and went to graduate school. I changed jobs, within my company, too. Life was good. For the most part..My Mommy Mymom had ataxia. The long name is spinocerebellar ataxia type 2 (SCA2). What is that? In simple terms, it is a condition that gets worse over time and mainly affects movement and coordination. People with it often have trouble with balance and coordination, including jerky eye movements, slow eye tracking, and sometimes weak eye muscles or symptoms similar to Parkinson’s disease. Early on, their reflexes (like when a doctor taps your knee) are unusually strong, but these reflexes can disappear later as the disease progresses. From what I know, its hereditary. My mother had it. So did her father, and one of her brothers. From what I remember, she used a cane. And eventually a walker. It affected her speech, eventually. Slurred her words some. But I understood her. I think she was diagnosed in her thirties. It was after my brother and I were born, and she had my brother at 31 or 32. My mom had one sister and 6 brothers. From yearbooks, she was a queen in high school. She went to Spelman College for undergrad and got a Master’s degree from Atlanta University, before it became one half of Clark Atlanta University. She worked as a financial analyst at IBM. She probably worked other places too, but that’s the one I remember. I remember her working when we lived in Connecticut, but when we moved to Coral Springs, she didn’t work anymore. She didn’t drive much either. She would go to my brother and my games, with my dad’s help. We went on vacations, I’m assuming earlier on. We went out to eat sometimes. I remember not liking it. The stares of strangers still haunt me. I still have the memory of walking to our table, at a restaurant, and being stared at by patrons. I hated it. But inside our bubble was cool. The bubble consisted of family and close family friends. And even acquaintances. Like other soccer, track or football kids and parents. Nobody ever asked any questions, or made our family feel out of place. I loved my mom. I don’t like referring to her in the past tense. She was funny and blunt. She didn’t sugar coat much. She was stubborn. She enjoyed cooking. She loved wings and fried chicken. She talked during movies and tv shows too much. She would ask you to take her one place, and once she had you in the car, her errand list was a mile long. And if you complained, she would just laugh. We became closer when I went away to college. We would speak on the phone daily. She would help me keep secrets from my dad. Like piercings and tattoos. When I would come home to visit, I would cry when I left. I could see the progression. And I wasn’t there to take care of her. My dad was a great caregiver though. I would feel bad leaving it all to him. But my parents wanted my brother and I to go off and be free. We never talked about it, as a family. My mom passed away when I was 34 years old. My Story Before College I remember having a pretty good life. I was born in Columbus, Ohio. Then my family moved to Wilmington, Delaware; Boca Raton, Florida; Danbury, Connecticut; Coral Springs, Florida. I have one younger brother. My parents were married for 35 years, before my mother passed away. I grew up playing soccer and running track. My brother played football. I liked school and did well. I was in honors English, and enjoyed reading and writing. We went on family vacations, two a year, if I remember correctly: a summer trip and a trip during the holidays. I remember visiting Aruba, Barbados, Jamaica and Puerto Rico. And I remember visiting my cousins in a suburb of Los Angeles at Christmas. I remember being very social. My circle of friends wasn’t huge, but I often had sleepovers, went to parties, swam in our pool and the beach. I worked a little in high school: Wendy’s and Sweet Tomatoes. I babysat. Life was good. But everyone didn’t know this one thing about me.Why am I writing this? I am writing this because I want to see how far I’ve come, and maybe help someone else. In life, a lot of us have beautiful experiences. A wonderful story to tell. In fact, our lives can look perfect to outside people. But what is really going on? What if we told people our real thoughts? What struggles are we dealing with? And what happens when something happens to you? Are you going to give up? I thought I was. I was a ball of nerves and scared every day, for years. I didn’t want to continue like that. So I went to therapy. Therapy saved me. It didn’t stop the inevitable, but I learned to deal with something. It gave me tools to use, but most importantly, it opened my mind. It reminded me that I’m a smart girl, I think logically. I grow. How I feel about something on January 1st, is not how I have to think on December 31st. I am always a work in progress. And this goes for anyone. We can all take a close look at ourselves, choose to improve, and be proud when we look at all we’ve overcome. This story I want to tell isn’t really about me, per se. But how my past looked good on the outside, had a few struggles, which affected my mental health for years. I was diagnosed with a disorder, after years of having anxiety about it, and I was a wreck. I wanted to give up. But I pulled myself out of it, and I still am. How? By being very introspective and honest with myself. This is part of my journey.
My Journey and What I’ve Learned 