Tag Archives: depression

Invisible Disability and Trying to Explain It

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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.

Sincerely,

 

Mary

Acoustic Neuroma – Depression and Timelines

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Depression and Acoustic Neuromas are definitely linked – in my non-professional, experiential opinion. The same sentiment has been expressed by many others throughout the acoustic neuroma world. I don’t know if it’s because our brains have been invaded or because our lives are too often turned upside down. Regardless of the reason, I can state that depression for our world, and the world of anyone recovering from a major medical crisis, is real.

When I was in the hospital, my family and I learned that “hospital time” is often very different from “clock time.”  Frequently, the time given for appointments, procedures, and hospital releases are truly more of an estimate or recommendation than an actual time that is met.

In defense of the medical profession, there are valid reasons for delays. Critical cases pop up. Our bodies heal slower than we (and the professionals) predicted. And when a doctor spends some extra time answering my questions, I always appreciate it and think about that when delayed – perhaps someone really needed an answer and I’m happy to think my doctor took the time to answer rather than abruptly leave the room in order to be punctual.

Therefore, it shouldn’t be a surprise to us that we each have our own “acoustic neuroma recovery” timeline. Each tumor grows at a different rate – though all within a somewhat common range. Each tumor causes different symptoms – all within a family of symptoms. And each recovery from treatment takes a unique path – somewhat within the guidelines (not strict rules) of the acoustic neuroma rules of nature.

Depression is one of those paths that each person takes – ranging from mildly set-back to debilitating and clinical. We are depressed that we got a brain tumor – but grateful to be alive. We are depressed to lose our old selves and each take our own time to return to ourselves – or more commonly come to terms and acceptance of a new self. One with different limitations wrapped into an old self who remembers.

Depression is not just a feeling, but a chemical imbalance in the brain that we need to really work at to change. Again, each person has their own path – some use therapy or pharmaceuticals. Others use natural holistic approaches. It is not often that we can just think our way out of depression. It’s like getting out of a well pit without a ladder – kind of hard to impossible on our own. One misconception about depression is that we want to stay there. We really don’t.

What is helpful from those around us is acceptance and grounding. Acceptance that we are going through a rough process that nobody can shortcut for us. Acceptance that we are still the same inside but fighting a new dragon. Grounding that we aren’t being judged for having our own path. Grounding that those who surround us are walking beside us.

It took time for the brain tumor to grow. It took time for our bodies to heal and adapt. It will definitely take time for our emotions and brain chemistry to adjust. Most importantly, it sometimes takes a long time to adjust our sense of value to the world and to redefine our individual comfort zones.

Acoustic Neuroma Life – Some days are up yet others. . .

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My day hasn’t been all sunshine and roses. Oops. I’m determined to not use cliches in this blog entry. I want to find new ways to describe how it feels when “the bottom falls out”, or you “get that queasy feeling in the PIT of your stomach”, or “are blindsided” by emotion or circumstance. The bottom of life falls out and you go into a sinkhole?  What is a stomach pit?  Learning something unexpected leaves us feeling like we were plowed into a snowbank while walking along a sunny, summer path.

Can you tell I’ve been having a bad day?  I will be candid and say that out loud. It doesn’t matter why, because it isn’t the first or last. What matters is how I process it.

The day I’ve been having is heavy. It’s one of those days when I am not a cheerleader for anything. I feel lousy. My heart has become over weighted by “stuff’, which is pushing down on my abdomen (technically not my stomach) to cause crowded sensation and a squirmy feeling. A feeling that I don’t like. A feeling that I want to step away from.

Sometimes we push so hard to keep moving forward in life – and that is for everyone, not only acoustic neuroma patients – that we don’t take time to breathe and regroup before the next push. Attending a noisy party where we look straight into someone’s eyes to find that it wasn’t their voice we heard. A push to compartmentalize head pain, convincing everyone and ourselves that we’re just fine when we aren’t. It’s a fact that sometimes pain wins. Sometimes that next push is just getting up in the morning with a wonky head and buzzing in our ears. Sometimes it’s reaching deep for a sense of humor when all we really want to do is cry.

Well, today I had thoughts flowing through my head about moments lost, memories forgotten, regret for what could have been. I belabored lost opportunities in my life and things I cannot do. I failed to acknowledge successes by minimizing them because I’ve had a hot, soaking immersion in self-pity.

Life is not fair. I don’t get it. I don’t like it.

Well, what did I do about it?  First I took a nap. Then I went for a walk in the very cold Michigan spring air. I inhaled and exhaled. I gave myself time to wallow, but reminded myself of the reasons I prefer to keep going. I reminded myself that I can breathe. I can find pleasure in new things. Yes, kicking and screaming at the things left behind, but new and pleasurable nonetheless. If we lived our lives based on losses, we’d still be missing our first favorite t-shirt. Like the navy blue Adidas t-shirt that I had when I was twenty. (not that I remember how comfortable it was or wonder when I let it slip away. . .)

I love life. Unfair, stinky, painful life. I recognize that some of the toughest times that I’ve experienced left me feeling stronger or closer to someone in my life. I love joy and the feeling that inflates my heart with warmth instead of weighing it down with stuff. Today I had to take it back a couple steps from my usual fervor. I stopped looking at the pile of stuff that needs to be addressed and focused on the next minute, and then the next hour. I sent my pouting mind to a happy place. A place where I am alive, taking things a day at a time, knowing that a bad days will be followed by good ones. And knowing that really bad days allow me to recognize and appreciate the joy of a spectacular day.

Thanks. I feel better.  Time to go play with my new puppy.

The Holidays – Two Sides of a Coin

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half and half

Yep, here I am I am on the holiday bandwagon saying THANKS. As an acoustic neuroma recipient, there are also things that I admittedly am NOT thankful for and willingly admit it. So, in the spirit of making lemonade out of lemons (forgive ALL my intentional clichés), let me see how many things I can turn around.

  • I am NOT thankful for getting a brain tumor, but I AM grateful for many lessons I’ve learned since my diagnosis.
  • I am not thankful for daily headaches, but they have helped me learn to live fully on days that are less painful. I have learned to observe more and appreciate non-participation at times from my quiet corner of a noisy room when my head is screaming.
  • I am not thankful for facial paralysis and synkinesis, but it has helped me focus on people instead of their appearance. I understand what it is to feel different on the inside than what I can express on the outside. I’ve learned that body language is much, much broader than a smile.
  • I am not thankful for losing the hearing in one ear. I am thankful for the hearing that I do have. I have learned to let go of control in some situations (yes, I have been known to be a control freak). I now enjoy seeing others lead and find it relaxing to let others communicate. I’ve learned to trust the people in my life to let me know when I didn’t hear something important, casually and without making it awkward by gently repeating what was said.
  • I am not thankful for having a dent in my head. I have, over time, learned to chill more and relax tense muscles. Inhaling and exhaling are underrated. I pull my shoulders down and back, releasing tension that builds on itself in my body. I’m amazed at the difference I feel almost instantly upon a posture change.
  • I am not thankful for tinnitus. It isn’t fun to have nonstop buzzing in my head that varies with eye movement. It is not fun to have roaring in my head after braving a concert, movie, or noisy restaurant. I have learned to be thankful for things that peacefully block the noise somewhat. Natural sounds of waves bring peace and solitude. Birds and rustling in the woods is pleasantly distracting. I find it interesting that the best sounds for blocking tinnitus are sounds in nature.
  • I am not thankful for the independence that I lost. I appreciate regaining what I have and value freedom. Conversely, I’ve learned that dependence is sometimes a gift for both parties. I’ve learned to better appreciate relationships and people in my life.
  • I am not thankful for the emotional upheaval and depression that I’ve had to fight through. While deep in despair, I remembered what happiness felt like and fought to find and embrace joy again. I treasure smiles, giggles, and laughing.
  • I found nothing about a brain tumor to be funny despite nonstop jokes that I made when diagnosed. However, I’ve learned to laugh at myself and not take things so seriously. Really, not hearing someone is no reason for humiliation or embarrassment. I’ve learned to not pretend to hear what I didn’t and simply ask for a repeat of the question.
  • I was not at all thankful to end my career early despite years of wishing (like most people) for early retirement. Brain surgery is not a good way to get out early. I did learn though that I have a passion for writing and it is something that I can do when able, and think about when disabled by pain or fatigue. I can connect with people in ways that bring community and mutual benefit. Even though I don’t do what I used to, I have been able to find a new place in life.

I could go on and on, but won’t. Overall, I’m recognizing that life truly is a gift with no guarantees. While issues following brain surgery are real, I’m alive to experience more joy and human connection than sorrow, discomfort, and isolation.

Lessons Learned from Brain Surgery – Depression

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It is accepted by all that a brain tumor is a “disease” that warrants attention as well as acceptance. Whether one has surgery, radiation, or close surveillance until/if treatment is necessary, their life has changed when hearing the words, “You have a brain tumor.”

Just as real for Acoustic Neuroma patients is the very common outcome of Depression. It is rarely discussed as freely as the “thing” growing in one’s head. It’s common to hear:

“It could have been worse, right?” Well, that’s helpful.

“Aren’t you just happy to still be alive?” Alive, but different takes adjustment, grieving, and acceptance.

“Why can’t you just get over it?” We ask ourselves that too sometimes, just before we walk into a wall, put drops in our dry eye, or grimace when seized by head-pain.

“Post Traumatic Stress Disorder from planned brain surgery?”  Yes, it is possible. If one’s life has been suddenly and dramatically changed, PTSD is possible. Life looks different when you can’t do things that used to be a no-brainer (pardon the pun).

“Traumatic brain injury doesn’t result from skilled surgeons who delicately enter your skull does it?” Yes. Surgeons are skilled and they can do everything perfectly, but the brain is a delicate entity that hates intrusion.

Depression is like a blanket. Sometimes, it comfortably surrounds you and makes you want to stay under forever, curling up in isolation. Sometimes, it stifles and makes you want to squirm and push it’s itchiness away as you crave company. However it fits or feels, depression is real and a common issue following brain surgery.

Life has changed, for most, in ways that cannot be measured or even explained.

So, what do you do about it? Talk to family, friends, and professionals.  Sometimes medication is necessary. As unique as each Acoustic Neuroma tumor is, each emotional outcome is similarly unique. Finding a community in your area or online brings camaraderie and smiles of understanding.

Acceptance of the “new you” is a process that does not happen overnight. Like the tide coming in and out from the ocean’s shore, waves of depression can come and go. Waves of acceptance come and go as do feelings of frustration with any limitations that may linger. Sometimes you don’t recognize the blanket of depression until it has lifted – even a bit.

Time is a great healer. Finding the patience for time to heal is not always easy for AN survivors or the people in their lives. Recognition is the first step. Not being embarrassed by something beyond your control is another step. Pulling it back into your control is the biggest step.

My ongoing advice is “inhale, exhale. . . ” and don’t hesitate to ask for help.