It’s been awhile since I posted. Not intentionally, but sometimes it’s hard to get started again. What to say, what to discuss, what to say that’s new.
However, I was recently talking to my friend Mary, who is suffering from atypical trigeminal neuralgia. It has been frustrating to adjust to the world of disability. Let alone the paperwork that is expected – all while in pain. None of us think that our lives will ever been disrupted by a physical brick wall. But it happens. While her disease is not AN related, the parallels are strong.
Mary has going through the process of filing for disability insurance and wrote a letter attempting to explain why disability cannot always be measured by traditional definitions and measurements. The impact goes beyond simple questions related to sitting, reaching, and lifting. She was kind enough to share her letter with me and gave me permission to share on my blog. I think many will relate to her journey and the impact that disability had on her life
So, maybe I didn’t get writing again – yet – but here’s Mary’s guest blog contribution. Thank you, Mary, for your willingness to share with such honesty and openness.
Dear Disability Insurer:
I am happy to fill out these forms regarding my daily living and work history for my disability insurance application. However, I don’t feel that many of the questions are pertinent to my disability and my situation.
I have atypical trigeminal neuralgia (ATN). The Wikipedia explanation is pretty good: “ATN pain can be described as heavy, aching, stabbing, and burning. Some sufferers have a constant migraine-like headache. Others may experience intense pain in one or in all three trigeminal nerve branches, affecting teeth, ears, sinuses, cheeks, forehead, upper and lower jaws, behind the eyes, and scalp. In addition, those with ATN may also experience the shocks or stabs found in type 1 TN.”
My pain feels like a horrible toothache (like an abscessed tooth) coupled with a headache with nausea. I have constant GI issues due to the medications and have to be close to a bathroom at all times. Any movement, including walking, driving in a car, etc. can intensify the pain. The pain also increases as the day goes on and it requires Opioid medications to keep it in check.
The pain is the worst at night. Sometimes, as last night, I have an incredible urge to yank out bridges that are in my mouth due to the pain. I have to quell the desire to do so. If I am maxed out on my pain meds, I lay very quiet. Eventually, I take an Ambien and hope for relief through sleep.
I have been to more than a dozen doctors since 2014, including neurosurgeons, neurologists and specialists to seek a diagnosis and help with my complex illness. I spent more than a year searching for a diagnosis alone. Once diagnosed with ATN, the neurosurgeon, told me I wasn’t a candidate for surgery and there is nothing he can do for me. After three years of trying different meds my neurologist said he didn’t have any other ideas of meds that could potentially help me. The meds I have tried have side effects that can be as difficult as the illness. I can be ravenously hungry on one, and nauseous from another. They make me tired and lightheaded.
Dealing with constant, daily pain (practically every waking hour for me) is draining and exhausting. The constant pain interacts with my activity level, my energy and with my thinking and memory. It is debilitating.
The form asked me to describe what I do from the time I wake up until I go to bed. Right now I am able to live independently though with help from friends and family. As you also ask, I can bathe, dress myself, cook a nutritious meal, etc. However, I have learned that if I use the stove I have to set a timer. If you want to know what happens if you boil eggs and you forget to turn off the burner, I can tell you. There is a distinct popping noise…..I can make my way to the grocery store 2 blocks away and to water aerobics at the rec center a few mornings a week. I have learned that I always must park in the same spot when going to the grocery store, rec center or Target. Prior to doing so, I have thought my car had been stolen only to learn I forgot where I parked it. I have to accommodate my disability on a daily basis. Even writing this and filling out the forms required me to get help from two friends. I am well aware that my disability may require me to move to a situation where I have more support.
Most mornings, however, come midmorning, the true and only goal for the day is to ward off pain. In fact, before my disease was diagnosed, my dentists and I thought it was solely toothache pain and I went through root canals and eventual extractions of both upper incisors. I tried to have a crown placed on one of them, but it incited too much pain. So I am missing a bunch of teeth which impacts what I can eat. I can’t smile otherwise I reveal that I have lots of gaps in my mouth.
You ask how well I follow spoken and written instructions. I have word and name recall issues. I am very forgetful. I often miss appointments, which is very humiliating to me. I have a checklist of things to remember before going to bed at night, such as locking doors and windows, and making sure the burners on the stove are off. I require help to fill out the numerous disability forms I’ve faced with both the private insurance company and the government.
The form asks: Do you have any problems getting along with friends, family and neighbors? While once I was “easy going” and mild mannered, my family would probably describe me as being irritable, and irritating. Small things bother me.
As you asked, I have a pet dog, Fiona. She is my service, aka emotional support dog. She is an energetic 5-year-old pup who loves to chase balls. She is my companion in the truest sense. I sometimes worry that I neglect her when I don’t feel well. I do care for her, but quite honestly, I sometimes forget to feed her and other times I feed her twice. I have neighbors and friends who take care of her when I’m not feeling well so she’s not totally ignored. I sometimes think I live for this dog’s humor, love and companionship.
As I write this section, today is Memorial Day. In my prior, pre-ATN life, I would have enjoyed this May holiday on a bike ride or hike or playing golf or tennis or going to a barbecue or whatever. Now I’m just home for the day. I hope to plant a few flowers in pots and maybe make a phone call to my sister. Hopefully walk Fiona two blocks to the park.
You asked about my work history. In 2000 I started with a financial services company as a part time reporter. Over the years I was promoted to a fulltime reporter, then an editor and then to senior editor, a top-level position at my company. I had a thriving career. I was engaged with smart, energetic colleagues. I talked to sources that provided the intelligence for my financial analyst reports. Once per quarter I travelled to visit clients in San Francisco, Chicago, New York and Boston. There I met with our clients, portfolio managers, who were all incredibly smart and our meetings required me to be at my sharpest best.
It was during these meetings after the onset of my illness that I clearly demonstrated my weaknesses: I couldn’t come up with names/statistics etc. and looked to my colleague to help me out. When my work started to decline and I had more issues with recall, memory, etc. my boss asked me to apply for partial disability (originally through my company’s private insurance policy). My employer was accommodating and I worked part-time for a year. But even with the fewer hours and reduced work load and with no more travel, I was unable to complete my job functions successfully. So I eventually left work altogether in June, 2016.
The meds, and the pain, make it difficult to concentrate and read (I have to limit computer time). Dealing with daily chronic pain has wreaked havoc on the skills that allowed me to perform at my job. It has impacted my cognitive abilities that allow me to think clearly, read and travel.
The employment section asks me questions I’ve been asked on numerous disability forms. How many total hours did I walk, stand, sit, climb, crawl, reach? How much did I lift and carry? What’s the heaviest weight lifted? “Check the weight I frequently lifted….” It seems these forms are intended for physical laborers, and not someone whose job is like mine. My disability involves the brain and the mind.
Like many with this disease, I battle depression and isolation. Whereas I was highly social and “on the go,” prior to onset, I am mostly alone now. Some friends have been great, but many, well, I just don’t hear from them anymore. I go to a therapist every two weeks. I’m trying to figure out how to best live my life given my situation.
So now I trod on trying to make it through my day. I try to have a touch of purpose, whether it’s sweeping the floor or washing a load of laundry. I know a good chunk of the day will spent lying on a couch. TV and radio can be too noisy. So I sit, quiet. I hope I can get through the day with an ounce of grace.
Yes, so true about invisible disability. Elegantly depicted the reality of the daily behind the scene struggle.
Thank you for giving voice to unseen and unheard suffering. A true testament to your courage and eloquence. Hats off to you & your companions, human and canine.
My husband, both my children & I have different invisible disabilities. My husband’s is obvious when he wears shorts; he has no cartilage in his knees so he wears compression braces. The rest of us have totally invisible disabilities. One child has Fetal Alcohol Syndrome, ADHD, PTSD, extreme anxiety and Hashimoto’s Thyroiditis. The other has high functioning autism, ADHD, PTSD, extreme anxiety, and depression. I am more than half deaf (totally in one ear due to brain surgery to remove an inner ear tumor), 24/7/365 vertigo from the balance nerve being cut during surgery, chronic fatigue syndrome, and secondary PTSD.
I just tried to explain how my kids act to a friend. “Oh, that’s nothing. My kids did xyz.” I tried to tell her the kids would rage & fall apart once they return to our house. “Oh, that’s nothing. You should see when we take Jimmy home from a friend’s house! You’d think we were killing him.” But Jimmy is 5. My kids are 13 & nearly 15.
I switched to speaking about myself, chronic fatigue & PTSD. “But you’re out here today and you’ll be doing that tomorrow and you said you’re taking the kids to swim & hike on Tuesday. You can’t have chronic fatigue and do that. And you haven’t been to war. There’s no way you have PTSD. What a stupid thing to say.” Yes, I push thru what I have to but I hit walls & HAVE to stop. The KIDS will be hiking & swimming. I will watch every move they make from the porch/ beach.
Invisible disabilities are awful but we live with them, in our own little eorld, taking care of each other.