In college I stopped walking. I fought that steep and jagged slope for as long as I could. I considered graduating high school early so I could take a semester to get strong (I did not do this) and contemplated moving cross country so I could attend a microscopic college campus outside of Los Angeles (I did do this).
But when I actually got there a switched flipped. I was done walking I just did not know this at the time. My legs acquiesced to a completely chair bound routine and my hands picked up the burden my legs could no longer bear. It was the start of a love-hate, and completely codependent, relationship with my hands and arms which led to three surgeries in the ensuing years.
I had a hard time accepting these changes... Instead of choosing them I chose to cope in a series of strategies that ranged from fairly innocuous, to certainly maladaptive, and even severely jeopardizing. The sum of which led me to the counselor who saved me.
She suggested having a walking funeral. And while the idea certainly was not mine, and I was puzzled by the idea, I took it upon myself to create a space that I could literally and figuratively leave behind. I won't lay it all out here but I will say that it involved wine, wine, and cake.
And ice cream.
So much like that I feel like creating something that captures the past three years. I think I needed to write this out to help expel the funk I have been in for the past couple weeks. Because as anti-climatic as not working is, and as far back as I can trace the origins of the decision, it still feels jarring.
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In 2010 and I was happily married and expecting my second son, and was working full time. One day in the spring I got a letter from my neurologist informing me of my upcoming yearly visit. Her office is notorious for randomly scheduling folks and being inflexible about rescheduling. I requested that the date be changed so I could save the requisite paid time off for my maternity leave. I gave them my due date and asked that the new appointment correspond with my leave.
I thought it was a simple enough request. Instead I received another letter stating that my appointment had been moved to just before my due date. I did not go to the appointment. Instead I spent that day in the hospital soaking in my newborn son. When I held my cuddly younger son I knew that I wanted to be home with my baby and not working. But I could not take care of him on my own and we could not afford it even if I could. So I returned to work nine weeks later and I cried everyday for the first two months. Between the tears shed and milk pumped, the days past quickly. And with that I fell off the neurology radar.
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It took me two years to make myself go back to this doctor's office. I was a few months' shy of my 30th birthday. And this "reunion" brought back some bittersweet, nay, simply bitter, feelings. Between that and my heightened physical weakness my doctor thought it was time to work less or no longer work at all. And she does not keep her opinions to herself. But I knew I had only so many working years in front of me. The idea was a very vague, nagging concept. I knew I would not be someone who worked until retirement age but I did not know when things would change. Maybe in my 40s?
As the months progressed after that neurologist visit, I started to realize that my body was changing and that the pains and discomfort I was having probably were not fleeting. I had had my children when I was 24 and 27, and the thing is, pregnancy exacerbates my neuropathy. Allegedly. I do not know if it just the added stress or the added immobility, some combination of the two, or simply the catastrophic effect of the years flying by like flashes of lightning.
I had been casually flirting with the idea of changing jobs to one with fewer hours or that required less of a commute. But now it was becoming increasingly evident that I needed this change. My thirty two hour work weeks and 45 minute rush hour commutes were too much; however, things don't click just because you want them to. Most positions required one of two things: 1) at least a basic license, if not the highly coveted clinical license, and/or 2) for the employee to do home visits. Not the ones where I met clients in a McDonald's (I never ordered anything) or the handicap accessible, public library, because these prospective clients were ill and home bound. And the last thing I needed to do is smash someone's walls with a slip of my wheelchair or compete with them for proper parking. So to broaden my options I became licensed. And around the same time I began the daunting process of seeking treatment for a bad leg that was making sleeping impossible.
At the very beginning of 2014 I interviewed for a part time position developing a new program for underserved cancer patients. And it so happened that the agency was five minutes from my house. We had had a massive snow storm the day or two before the meeting. The roads were a mess but luckily my husband could take me. The interview left a sour taste in my mouth. My would be supervisor had called me the day before to confirm that we were still on in spite of the snow, yet she was very late to the appointment because she got caught in traffic. I had tried calling the office and knocking on the door but no one answered. It is a weird feeling waiting in the hallway in a multi suite office with no one answering you. But at least I was inside and not in the cold. I thought the person who was meeting with me could have at least called me from the highway to cancel or delay the meeting. I got over being inconvenienced, we began the interview, and she interrupted it to call another candidate to confirm if they were still coming in. As the interview went on I grew progressively less interested. The job was contract work and they were trying to secure additional funding for beyond the first six months. OMG. I should have trusted my gut because initially I was not going to accept any offer.
I was not surprised when I got the call a week later with an offer. I needed to think about it and discuss it with my husband. I scheduled a follow up meeting for the day after my 31st birthday. The odd thing is I wanted the job. Something changed and I really wanted to believe that they would keep me on board. So with my husband's blessings I would up saying goodbye to my fresh-out-of-grad-school social work job and parted with clients who I had known for over half a decade.
And my new job was bordering on dream job status. I was creating a niche for myself within the agency and the community at large, while doing what I loved doing. I went to work after dropping off my 7 year old at school and got home in time to get him from the bus. And on Fridays I wasn't working so my 3 year old had bonus mommy time. And as far as funding I was told I had enough for my first year there. It was, work-wise and family-wise, a great spring and a great summer. Just not health-wise.
I was no closer to answers or relief with my leg and I was out about 1K in medical bills during my ::quest:: for a better leg/life/sleep. Then in September I got some weird month long respiratory bug that wasn't pneumonia and wasn't bronchitis but wasn't going away. I abandoned my leg relief attempts and decided that if I could just sleep I could deal with the physical and emotional aspects of whatever the issue was. Or, maybe more importantly, I could deal emotionally and physically with the fact that the problem didn't quite fit into any one diagnostic or treatment category. So began my romance with ambien. It was the path of least destruction so I took it even though it was not exactly what I had in mind. But that's probably what every person on sleeping medication says, no?
Enter October and my supervisor quit. I was so mad at her because I quit a job to work with her and she was leaving me. I know how mature that sounds but she was leaving me to fend for myself financially. She agreed to look at my finances before she left. I brought it up again on our last day together. She told me the agency absorbed my funds into operations by the close of the fiscal year (June) with the intention that they would reallocate funds back to me when the grantors asked for follow up. Which they never did. I was asked if I really wanted to fight for my position or begin looking for other work. I did most of her job and mine in very few hours a week. I kept my program running and also prepared for its close. My funding, and what I had to offer, simply were not priorities.
The director of the agency called me in to go over how much longer they could afford me and to declare my official end date, which was scheduled for two weeks before Christmas. I applied and interviewed for several positions in that time. I squeezed as much as I could from every pay check. And on my second to last week I was told that my hours were miscalculated and I lost two days' of pay. Around this time my cubical and carpal tunnel pains began (more than a coincidence I am sure!). My first couple days of being a SAHM I managed to save my tears for once my husband got home. I dreaded having to explain the circumstances surrounding my departure from my previous employer to prospective employers and did my best to keep the prospects coming. But the pain got so bad I cut out all computer use , especially online job applications. In a daze I went on my last interview, just after my 32nd birthday. I gulped down silent sighs of relief when the hiring manager profusely apologized for an oversight he made concerning my candidacy. As it turns out I did not meet their qualifications completely, but more notably I became aware that the increasing burden of my limitations precluded me from working. Or thinking about working. Or coming up with start dates.
And so the story went. Within the last two years I have had three tenuous respiratory infections (1 pneumonia, 1 bronchitis, 1 illness N.O.S. and four rounds of prednisone), three MRIs, six x-Ray parties (sessions?), 15 orthopedic appointments, 3 neurology appointments, 1 return to the pulmonologist, 2 surgeries (4 incisions total), and 5 PT/OT appointments. And in all that I have still struggled with the idea of not working. I wanted to choose to not work rather than have my limitations force the decision for me. I had placed my goal to work till I was 35 but I was tired of bargaining with my body for three more years. So in March I purposefully crossed what feels like a blazing hot social work line and applied for disability, blissfully unaware that I had already crossed the line between "can" and "should not" work. And in spite of all the obvious, I expected a fight.
