By Ellen Lenox Smith.
Living with chronic pain can prove to be physically exhausting and, at times, emotionally overwhelming, to say the least. For years, I have been coping with two incurable conditions, sarcoidosis and Ehlers-Danlos Syndrome. Unfortunately, one symptom of EDS is the incapacity to metabolize many medications. In my case, this would translate into years of untreatable pain. It took years to find my two compatible pain relief medications and strangely, both turned out to be considered controversial, cannabis and ketamine. Medical symptoms such as pain must be adapted as some periodic roadblocks but not permanent obstacles to seeking purpose and meaning in one’s life. But one thing I keep having difficulty working work with emotionally are those bad days that hit that are so intense and disruptive, arriving after a better day or two that fills you with hopes and dreams. It becomes hard to try to remember the good and the hope you want to hold on to, which seem to rapidly get erased from my mind. So, down that emotional tunnel I fall. As patients with chronic disorders, we must learn to be kind to ourselves. We need to accept limits exist in our capacity for suffering. Acceptance is not surrender. Acceptance is patience. It may mean temporarily leaning on our support system without feeling weak or inadequate.
Ehlers-Danlos has a habit of taking you on a journey of constant surprises. You no sooner get past a subluxed or dislocated joint and thinking you can relax and move forward again, and then it happens, usually with no warning that something else decides to become an obstacle. I struggle more than ever with the backward spiraling. It deflates you both physically and emotionally. I have to not only cope with the new medical issue but also with how I can make myself snap out of the heartbreak, knowing that there will not be a quick fix. I am grateful to have those occasional better days, but the regressions particularly following a series of good days are my greatest challenge.
Recently, Stephen Hawking passed and I happened to catch ten quotes he loved to live by, that so touched me. One is: “However bad life may seem, there is always something you can do, and succeed at. While there’s life, there is hope.” Stephen Hawking’s inner strength and perseverance may be well beyond the human capacity to measure these qualities. While those of us functioning in the normal range of human existence should never have to measure our productivity and emotional adjustment to Mr. Hawking. We can, however, make every effort to try to emulate his efforts which appear to have brought him a sense of self and produced an astonishing connection and contribution to human development. This man suffered for years with ALS yet look at all he accomplished in his lifetime! While suffering one of the most debilitating of conditions, Mr. Hawking became a giant in his field. It was not his brain that drove him to be a productive member of society and giant in his field but his attitude. Few of us can hope to compare our lives’ accomplishment to Mr. Hawking but all of us can work to try to adopt his attitude. For me, my service dog, my support system of family and friends, exercising to try to keep muscles strong and writing are wonderful outlets. I need to hold on to on those especially on the days I slip backwards. And, if the day is too difficult to accomplish what I want, then I need to not beat myself up but let the day pass remembering there will be a better tomorrow to go back to, allowing return to those things I can still do and love.
He also stated: “People won’t have time for you if you are always angry or complaining.” I have seen those with the negative attitudes pushing others away. We have had that happen in EDS support meetings, meant to help educate and empower each other. When someone arrives and dwells on sharing how they are worse than everyone else, despite us not seeing this as a competition, and sometimes even deciding to interrupt a speaker, they have to be spoken to. It is not pleasant to have to address this but it turns others away and isolates that person acting like this. I know we want to shout out to the world on those bad days - “we are hurting, know what I am going through” - but that only turns others away. We have to be selective as to who we open up with.
And my favorite quote of Stephen’s is: “Concentrate on things your disability doesn’t prevent you from doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit as well as physical.” What wonderful words to live by and how amazing despite his severe limitations, he could believe and live by this motto. It is a battle emotionally to achieve and then maintain this attitude in life. But we all need to remind ourselves that if Stephen Hawking could live by these words, that we, too, must work on digging deep for that courage and determination. No matter how things regress and let you down, we do still have that life to live and not waste. Yes, we mourn our losses but have to remember to also celebrate what we can do.
I am not going to say this is easy to accomplish. It took me a good year to begin to even accept my two presently incurable conditions, find things I could do and provide purpose and meaning back into life, not give up and continue to search for answers. It becomes a daily battle to stay positive. But, after thinking about what a person coping with ALS faces, it reminds me that although life can be a difficult challenge, I am still lucky to do as much as I can with my “new normal”. I will always miss the past - walking, swimming, lifting, hugging, running, etc. but I have a life to live despite these loses.
When those backward days hit, I want to hold in my heart those quotes from Stephen Hawking. He maintained courage and a life with purpose and meaning despite having to face tremendous loss. Days will continue to be forward and backwards, but my attitude will be what makes them more bearable. I will try to not to allow myself to be disabled in spirit. May we find the emotional courage to not drown on these days that let us down and push us away from hope and determination it takes to live life with chronic pain.
Ellen Lenox Smith lives in Rhode Island and is a chronic pain activist and writer for medical cannabis, Ehlers-Danlos and chronic pain for 1000 WATTS Magazine and National Pain Report.