The Vestibular Journey Begins! AKA When Sunny Gets Blue?

Mental Health. Loaded words to many, controversial to some. But for anybody with a disability or chronic illness, actual mental health is a worthy, but sometimes difficult goal to obtain. Amazingly, it is still misunderstood or ignored by many of those who decide what coverage is allowed by our health insurance policies. All too often it is still a source of whispers and embarrassment. In worst cases, it is a reason for ostracizing or worse.

Well, I’m here to tell you, mental and emotional health is a key to living your Best Life. It’s crucial to the compensation process, making up for what was lost due your disorder, illness, or disability.

If you have read my previous Posts, you know me as an eternal optimist, always looking at the bright side of things. Sunny outlook to a fault. You also know that in my Posts so far I tend to take a pretty light-hearted approach to the trials and challenges brought on by my disability. It’s not that I don’t take these difficulties seriously, but why live every day in a funk of negativity! Dwelling on what might have been or what life could be like? However, the danger in approaching life’s tribulations in a lighter manner is that the more difficult, serious aspects could become downplayed or even overlooked. They aren’t ignored, believe me.

This Post is the story of the first 9 months or so of my vestibular journey. I’m sharing this out of solidarity with all those who have suffered, or continue to suffer, from the onset of a sudden disability or chronic illness or condition. It is intended to show that you are not alone in what you felt, or perhaps continue to feel. Whatever the nature of your injury, illness, or condition, there is a large community of support that has experienced the same, or similar, thoughts and feelings.

WHEN SUNNY GETS BLUE

In the first few months of my disability, I’ll be honest, I was floundering. This is perfectly understandable. One day I’m living a pretty normal life, work, home, weekends, work, home, weekends, etc. All of a sudden, one day – BAM! – complete U-Turn, and my life is now – home, home, home….Maybe home, doctor, home, doctor, home, or some variation. And there’s nothing I can do about it! My life is not in my hands, and I am at the mercy of – who knows? Life has taken one giant detour. I’m suddenly very dependent on others and very – vulnerable. I can’t do pretty much anything that I used to do. Everything about my life had changed in an instant.

My days were filled with worry. What will the future be like? Will my short-term disability be approved again? Will my physician(s) get the paperwork completed in time? Will I have health insurance or an income when the short-term disability ends? Will I be approved for long-term disability? What about the horror stories of SSDI denial? I’m torn up inside, overwhelmed with all that I think I should be doing!

UNANSWERABLE QUESTIONS

And then there’s the never-ending challenge of explaining what happened and is happening to you. How are you feeling? What is different? What is it like? How are things different? I have seen a lot of vestibular patients complain about people being nosy, or just not believing their symptoms are “real.” This is not unusual for those of us with an ICI (Invisible Chronic Illness). We hear “Well, you look fine to me!” and take it as disbelief. Perhaps some folks can be cruel in this manner, but fortunately that was not my experience.

I felt early on that folks were caring and sympathetic, and really had my best interests in mind. They weren’t being nosy, but were really concerned about me, and only wished the best for me. And they were genuinely interested in my symptoms and diagnosis, as vestibular disorders weren’t exactly on their radar. I still believe this about the people around me. People often come up to me and tell me about their own or others’ similar experiences, asking for my opinion or advice.

But, especially at the beginning, I had to try to explain, over and over and over again. I don’t feel bad, I just feel different, I can’t exactly explain, I’m not really dizzy just kind of “off,” yadda yadda yadda. But it was okay. As time went on, though, I was just me again, and the questions stopped. But people still cared. Even today, friends and family ask how I’m doing, especially if they haven’t seen me in awhile. It’s nice to know I am loved and cared for.

GUILT!

Guilt! That is the Biggie. Guilt! As much as I knew intellectually that I didn’t do anything to cause this, still – Guilt! I worried about what my employer and colleagues were thinking about me. Do they think I’m faking it, that I’m not really sick? And what have they been told? Does management believe me? Wow, it’s a tough position to be in. Especially because I “look okay” on the outside. I have to say right now, that nobody at my employer made me feel this way. Everybody was always very understanding, supportive, and caring.

The good folks at VeDA had a couple articles on their website about the emotional effects of vestibular disorders. These were amazing articles that validated what I was feeling. When I found these articles, I knew then that I was not alone. I actually sent copies to my employer, thinking they needed “proof” of what I was going through (they didn’t). I have shared these articles with mental health professionals as well, as they helped to explain what was going on in my head.

I felt – Guilt! when my wife came home from work. She never made me feel this way. But I’d been stuck at home all day, doing…whatever, trying to keep as busy as possible. Trying not to just vegetate in front of the TV. I don’t recall exactly how I filled most of my days back then, but I did. This was before the marathon dog walks. I think I spent most of my time working on medical paperwork.

One thing that I don’t think I’ve mentioned yet is that a vestibular disorder makes you very, very tired. All the time. Your brain is working overtime, after all. Internally you’re trying to sort out all the miscommunications going on in your head body. Everything takes more effort. Walking, moving, thinking, existing. More effort. Veeeerrrryyyy faaatiiiigggguuuuinnnng….So when my wife got home, more often than not I was napping. And feeling very Guilty for doing so.

On top of all this, for a few years I had been going to the grocery store for my parents on my home from work. Now not only was I not going to work, but I couldn’t even drive to my parents’ house to bring groceries or help out with things around their house. They were suddenly having to find assistance with this elsewhere. So I was feeling – Guilt! – that I was letting them down. I just felt helpless.

Man, in hindsight, that’s a lot of baggage.

VeDA now has an entire section of wonderful and insightful articles dedicated to the psychological and cognitive impacts of vestibular disorders and chronic illnesses. Take a few moments to check them out.

Psychology

SHORT-TERM DISABILITY

When you’re on short-term disability, your friends at your workplace should be communicating with you, if they are following legal advice. I get it, as you are not supposed to be “working” and there is the danger that they could talk about work with you. But, in my case and for many others like me, pretty much my entire social network was my work friends and colleagues. And I had a lot of them, scattered all over the country. So I pretty much went cold turkey. The only contact I had with anybody at work was the day my wife and I were in the area for an appointment, and we stopped in so I could drop off my laptop. It was a nice visit with a lot of people, and I was able to say good-bye and have some closure.

I will say, my managers did “break the rules” and call me at one point. They very kindly called me and personally let me know that they were regretfully having to post my job. They felt highly enough of me and believed they owed it to me to tell me. They also told me that if I could ever come back, that there would always be a place for me. This was about 4 months or so into my disability, and it meant a lot to me then, and still does. I worked for good people.

So, almost 6 months in, and I’m counting down the days until the paychecks stop coming. Then one day, I get the call from HR that I knew was coming. They were forced to terminate my employment as my insurance had expired. Although I knew this was going to happen, boy, did it hit me like a ton of bricks. Six months of built up worry exploded, and I just sobbed and sobbed (I’m still tearing up writing this). The poor HR rep, who I knew a little bit, was crying as well. But we were all helpless, there was nothing we could do. I called my wife, and she rushed home from work to be with me, to assure me that everything would be okay.

DESPERATION

So what to do now? I applied for long-term disability, which of course was rejected. It’s a crock. Why offer it when it’s just going to be denied? Even after one of my physicians implicitly stated that I would experience a long term disability. I hired an attorney to appeal the ruling, but even he knew the chances of success were slim, and told me this up front. I started looking at the ACA health care exchange, pricing policies, not knowing what the future would hold. I remember looking at some job listings, only to be brought back to reality by my wife, who gently reminded me that I couldn’t work anymore. I honestly don’t remember much else about the next several months. But I do know there were some good things that happened. COBRA paperwork came, and the payments were affordable! Who would have thought it?

WHEN BLUE GETS SUNNY

It was like a miracle! I had applied for Social Security Disability, and was – approved! Like, this never happens? I guess my age at the time (mid-50s) was in my favor, and I must have pulled a favorable judge. I will say that I also put a lot of hard work into the application process, making sure that every note from every physician, physical therapist, or mental health specialist I saw was included with my application. They did not have to request anything further from me. I provided everything, crossed all my T’s and dotted all my I’s. I like to think this helped as well. I did my homework.

I recall vividly the day I received the approval letter. Once again, I sobbed. I called my wife and it was a good day. Finally, the first one in 9 months. I felt like a huge weight was off my shoulders and that I could breathe again. My disability wasn’t all in my head, it was a real thing.

DIGRESSION ALERT!

The SSDI approval was the first validation of my disability. Interestingly, and in some ways even more importantly, the next, and final, validation came a few years later. I had not applied for a disability placard for my car, as I still had one from a hip replacement. When it expired a couple years later, my physician agreed that I should have permanent disability license plates. When I received those, my disability truly felt real for the first time. It was kind of melancholy, but in a way it was a symbolic end to my previous life and the beginning of my new life. I felt like I could take another breath. Closure.

SO WHAT NOW?

As I write this, I am reminded how slowly time passed during those first months. It’s not easy to go back and relive difficult times of your life. But, as I will discuss in future Posts, at least I could still do what I really loved, what I was called to do, which was to be a musician. If I didn’t have that, I would have been lost.

It took a long time, years in fact, to “get over” the intense feeling of Guilt. But as time goes on, it begins to get better, to dissipate. You share stories and feelings with others like you, who have gone through the same thing. You learn more about your condition, and how it affects every aspect of your body. You discover what your limits are, and how to enjoy life within those limits. You find meaningful outlets to occupy your time. You realize it’s okay to ask for help, to not be embarrassed when you can’t physically or mentally do what everybody else is doing. You discover it’s okay, yes, really okay, to admit you can’t do something. It’s not weakness, it’s strength of character.

I’m still learning all of these things, and will always be learning and growing.

I have to say that I didn’t get as far as I have by myself. I was lucky, I had a great support system. My wife never doubted what I was going through, and was always there for me. I had (still have!) a very good friend who drove me to many physical therapy appointments at Ohio State, as well as a couple other appointments when my wife was unable to do so. I also had the support of many others, but I will not go into detail, as my Support System will be a subject of a future Post. I will mention again, however, that the personal call from my work managers really meant a lot to me, and showed their support as well.

I also was blessed to have my wonderful companion, Ella, to take me for daily walks. These became marathon, multi-hour treks that helped to fill my days, and aided tremendously in my “recovery,” both physically and emotionally. She will have a Post all to herself in the near future.

So as I wrap this up, I must admit that this was a very difficult Post to write, and it took a long time and many major edits to end up with the published version that you are reading now. It was cathartic, in a way, going back to see where I was and how far I’ve come. At the same time, it brought up long-forgotten feelings of sadness and longing for what I’ve lost. But you move on, you discover new challenges and interests, and you live life to the fullest!

When Blue gets Sunny, indeed!

Paul