Losing One Is Losing Many

Losing One Is Losing Many

I recently lost one of my all-time best girlfriends, and for this woman in pain it was more like losing a family. No, more like a whole community.

Joan was born with spina bifida, and was a tough, no non-sense woman with a heart of pure gold. She was the first person who introduced herself to me at my YMCA a decade ago, immediately making me feel a part of things. Most every morning Joanie doggedly swam for one to two hours, and you’d only catch her significant disability when she’d labor out of the pool helped by a lifeguard. Joan would then scoot into the dressing room aided by crutches and her bigger than life positive attitude.

All those years back, I had to decline, due to travel, Joan’s insistent invitation to her annual New Year’s Eve party, a bash complete with her husband Harry’s blues band. Upon my return, I invited her and Harry to my condo for dinner – and something highly unusual happened. Joan said yes. In this day and age, dinner parties have pretty much gone out of fashion, especially for those of us with profound disabilities.

That dinner led to countless more and a gorgeous friendship. Indeed, Joan’s home became the only abode I felt comfortable dropping by unannounced. Joan provided strong and steady grounding for me as she understood what few can, having had to use a wheelchair her entire life for any distance. Besides gal pal conversations about anything and everything, we’d discuss getting older with our disabilities, often sharing new technologies and services for easier access. I sensed Joan was worried about me because I’m just one person away from being truly alone. Joan was more fortunate as she had a son and family that stuck by her. Also, her illness was never doubted and her life hadn’t been upended by pain.

Being a native Angeleno, Joan lived her whole life in her golden-age-of-Hollywood home. She drove with no problem, thus avoiding being housebound. Due to all of this, Joan had a big social circle, many who were folks without supportive families in the area. I suspect that being sent to, in her words, “handicapped” school gave her a big heart for misfits and the disconnected. Joan believed that every holiday should be a big one, and that no one should spend them alone. With time, my partner, John, and I grew to adore the holidays again in her generous home with wonderful people making merry.

Cynthia Toussaint

You see, not long after getting ill with CRPS and other auto-immune conditions 37 years ago, the holidays had become a black hole of loneliness for John and me, something to dread like Marley’s ghost. Since the reality of Joan’s passing has settled in, I’ve thought about the reasons for our, and most everyone with high-impact pain’s, isolation.

To start, I recently read a report stating that 49% of people in the U.S. don’t think they have anything in common with a disabled person and that, more distressingly, 29% purposely avoid conversations with us. Additionally, many of our friends and family members leave post-illness. Also, if we with chronic pain can work at all it’s usually not in our chosen field (outcasting us further), and we’re often left working home alone. The rotten cherry on top is that many of us can’t have our own families, all a recipe for profound social isolation.

Other wild cards that separate me personally from others is my inability to drive, nearly from the get-go of illness. Also, I’m dependent on an elevator and caregiver to escape my condominium, leaving me vulnerable. In fact, our elevator is currently down for three months and John and I are dealing with new ailments due to him having to carry me up and down our flights of stairs.

My aging, memory-impaired mother has been dealing with health challenges for a few years, introducing her to the world of isolation. Ironically, Mom’s been reminding me to enjoy my younger years while I’m surrounded by people because “it won’t be that way once you’re infirmed.” I don’t have the heart to remind her that I’ve lived an “elderly-like” life for decades.

For we women in pain lucky enough to have a Joan in our lives, their passing is gut-wrenching enough because we lose a gem of a friend. Harder still, we lose a person who accepted and loved the real us along with their social circle that connected us to joyful things. We lose that once-in-a-blue-moon friend and community, so the loss is compounded many fold.

Besides sadness, I feel deep gratitude for every moment I had with my beautiful friend. If you have a Joan, please tell her or him how much they are loved and how lucky you feel to have them in your life.

You will live on in my heart forever, dear friend. I love you so very, very much…

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Cynthia Toussaint founded For Grace in 2002. It is a Los Angeles-based non-profit organization dedicated to bringing awareness to gender disparity in the treatment of pain. She is also a frequent contributor to the National Pain Report.

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Ben Worthington

Just a note how about the environmental impact my wife and I both live in the country in Ga. it is over 60 miles each way to our Dr’s office that is over 240 miles a month driven polluting out atmosphere just to make the DEA happy. Wake up America

Crystal

Cynthia, I want to extend my condolences to you on the loss of your dear and beautiful friend. Losing a person such as she is like MANY loses, not just one. I hope, in time, you will be able to recall all of the great memories and smile. People are put into our lives for a reason. I truly believe that. God Bless You and your family, and also the family and friends of Joan. Rest Easy, Beautiful Soul.

CATHY KEAN

Beautiful story honey, thank you so much for sharing!
Those statistics are so shocking pertaining to report you read stating that 49% of people in the U.S. don’t think they have anything in common with a disabled person and that, more distressingly, 29% purposely avoid conversations with us.

That truly is heartbreaking!
I never ever thought about it in that respect actually where individuals would think that they had nothing in common with a “disabled person”!
WHAT THE HECK IS A DISABLED PERSON? Do you lose your personality and value once you’re disabled? I had no clue!
And 29% go out of their way to avoid a conversation with one of us, “Disabled persons”…
Oh no, there’s that disabled person I must avoid them at all costs geez… I guess I’m taking the long way home… whew.. that was close… You know how those disabled people are! 😳

Please…
That’s the problem, you don’t. You don’t know how we are because your too busy avoiding us! Smh… that is truly sad!
Not just sad for the disabled community but, what message are these individuals receiving from the rest of the world to have 49% believe they have nothing in common with, or 29% avoiding, that’s truly telling and frightening!
Can you please let me know where you read these stats?
Catkean554@gmail.com

Thx hun again for your story!
Cathy Kean xo

Karen

I’m so sorry for your loss. I lost my best friend in 2014. I will never be the same. I’m thankful that we had the time to say goodbye and that she knew how important she was to me. I’m thankful that I was healthy enough at the time to support her the way she had always been there for me. I keep hoping it gets easier to bear.

Thomas Wayne Kidd

I feel deeply for you my friend. My landlord and close friend has just discovered that he has cancer. In wept bitterly when I learned if it. Condolences to you for the loss of your friend. God bless you.

Lisa Hess

Dear Cynthia, I am so, so sorry for the loss of your dearest friend. I too have one. We’ve been BFFs since the end of 8th grade and our 40th high school reunion is tomorrow night. She is going, I am not. I don’t know what I’d ever do without her for her words of support when I call her crying due to my home conditions. I’ve “run away” from home for days at a time straight to her house because life is too hard at home. I’ve been in chronic pain for almost 23 years and she’s been with me always, but could never really understand how pain could actually be so detrimental that it takes over one’s life. Two and a half years ago she txted me “I always knew you were in pain, but never appreciated how bad it can be until now I am going through it too.” She was struck down with Chronic Pain from several falls causing severe back problems for her. I’ve been disabled now for almost 13 years and she’s out for 2 1/2 years now. We’re closer now than we’ve ever been in our 44 years together as we have this bond that she now understands what others who have never experienced pain like we do can understand. Two years ago I bought your book to support your For Grace organization. I read it in less than a week and I was so moved by your’s and John’s story. Little would I know that two years later I would be diagnosed with CRPS. I’ve been very sick with new ailments hitting my immune system from Late Stage Lyme over the past four years. Because I’m so ill, my husband has a hard time dealing with my illnesses and now we are divorcing after 30 years of marriage because he said he cannot do the job of a full time caretaker for me. He carries guilt but cannot feel. I gave him your book to read John’s side. I hoped he would recognize a feeling but he did not. That was the last chance to save our marriage. Now I will be on my own leaving all that I love because my house is steps in every room and I can no longer climb them. I think I may move in with my BFF for a while.

Gail

I live in the heart of the witch-hunt!!! Where they claim they found doctors prescribing opioids to people who don’t need them (based on what I have NO idea!!)! This is so far out of control and sanity it is beyond the pale!!! Again, I Can’t imagine what basis these people have come up with now!!! I was a nurse (retired) and this behavior is self-aggrandizing by the CDC and a power play!!! And of course at the expense of people who are unable to fight the system!!! Why do they not pick on folks who are able to fight back!!! Perhaps if they put this much effort into bringing in the Cartels and Pushers we would NOT have the problem of people ODing and a mad march on treating people with NARCANS!!!
Narcans should only be used on addicts ONCE after that they have made the choice to kill themselves and repeatedly treating bad behavior is pointless!!! PLEASE!!! End the prohibition on legal medication that has a distinct purpose!!! Easing the pain and allowing patients to have a life should outweigh the desire to punish the innocent!!! This includes patients, doctors, pharmacists!!! This is the 21st Century and we are supposed to be enlightened: however, the people who have run off the rails should take a step back and reconsider the horrors they are inflicting on a large population!!!

M. Carson

I am so sorry for the loss of your dear friend. I wonder if you or one of Joan’s other friends could be the glue that holds her friendship circle together?

Dear Cynthia, I send you, John and Joan’s family my heartfelt sympathy, love and hugs to warm your hearts. I have also felt the loss of a good supportive friend. The picture of you and Joan is beautiful. I’m so curious as to why she passed away? Keep strong and hold her close in memory. Maureen M.

Debbie Nickles Heck, MD:
You are a real font of understanding & compassion. Isolation is all the fault the patient not acting/thinking right, eh? I’ll bet all our supposed “health problems” are also merely artifacts of our bad attitude & we’d be perfect if only we thought & acted correctly. Yowza. I have no idea what state you are in, but I just added another name to my “I’d rather drop dead than see that doc” list.
Charming times to you & your poor patients.

Kristen

Dear Cynthia,I am so sorry for the loss of your best Friend.I too have lost several best Friends over the past 7 years including my Son’s Dad and this past November I lost my Mother suddenly which I considered her not only my Mother but my Best Friend who together we could share good days and bad days without judging one another.I miss her very much and sadly was not able to attend her Funeral because I was in the Hospital.I am still bothered by that but I know she now is my Angel watching over me.I manage to get through the loss by remembering all the good times,bad times,and of course my Faith.I know she is in God’s arms and that brings me a great deal of comfort.I wish you much comfort during your difficult time.

Terri James

In the midst of tragedy there is also something else I would like to express. Whether advice to someone else is intended for the good or intended as a lecture; so many of us “have reached out to others.” A lot of us have been left by the wayside “only” because of our disabilities! I am one of them and I know for a fact I am not alone. Friends and family members alike avoided me like the plague after I became sick. I wish you could see the way people look at me when I park in a handicap spot, like I have no business doing so because I’m not elderly or overweight. (No offense to the elderly or those who have weight trouble.) Cynthia needs sympathy right now, not a lecture. If anyone has kept up with her stories one should know that she has done everything she can to put herself “out there.” One can only do that for so long, especially when your partner has to carry you up and down a flight of stairs to be able to go anywhere or when your medicine has been stripped or tapered to the point you feel your house bound more so than not. One simply has no idea what one is going through unless one walks in the shoes of another which is absolutely and Incredibly impossible. Unfortunately isolation is a large portion of what accompanies the disabled as well as the opioid Injustice. Something else we did not ask for. Speaking on behalf of myself it gets hard putting yourself out there over and over and over again just to continue to be rejected.

James McCay

I’m so very sorry for this loss Cynthia. Friendships like that are rare in any circles these days, especially when you are homebound like I am and your only medium for making friends is online; which is a oxymoron I’ve come to learn over the last decade.

Most people online looking for friends are hiding some sort of untreated mental illness issue that never is exposed until you’ve already invested a year or more into a “friendship”, then they expose their “dark side” and I have to cut them off because I’m dealing with more than enough as it is with constant severe pain from THREE Neuromuscular diseases. Then Pain Doctors cutting meds just so they feel more comfortable with the CDC DUMB “Guidelines” (that the FDA is now FINALLY agreeing with). I’d rather be all alone, than deal with “friends” that cause me more stress (which causes more pain)!

Again, I’m so very sorry. I wish you the very best and sincerely hope you can keep some of that good attitude that you learned from a priceless friend. That would be the best way to honor her memory- is to take care of yourself like she taught you.

Mareaeric Campagna

Thank you Cynthia for your touching column. I am so sorry for the loss of your dear friend. Friends are so wonderful to have, but friends that share a commonality with you really makes the friendship strong and personal. My best friend and I have lived with chronic pain for years. We really connect unlike some other friendships.

Rosalind Rivera

I can sympathize and empathize with the writer of this most heartfelt and very personal story. I’ve been living with Spinal Stenosis and a fractured lumbar area for years. At one point, I woke up one morning to find that I was paralyzed from the neck down. Fortunately with much pain, I can walk today but not without many after effects of my surgery, including non-stop paralyzing Pain. I also suffer from Lupus and a host of other debilitating diseases. I know how it feels to be alone, lonely and abandoned. My children have long since abandoned me save one whom I have sporadic contact with. My only friends and companions are my loyal pets whom I love dearly. I live in a very isolated community by the edges of the Mojave DESRT and have been living here for seven years now without having made one single solitary friend. I do try to get to church services as often as possible and my faith in The Lord is, I’m sure, what keeps me going especially since the continuing reductions in my pain medications. I have now become almost completely home bound and most of the day confined to my bed as the pain is just overwhelming. My faith is what keeps me going. I would very much love to have even one true friend with whom I could share and pass the time with. It would make my life much more bearable.

Rosalind Rivera
Lucerne Valley, Ca.

S. Dixon

How very sad to have such a wonderful friend gone.

Terri James

Dear Cynthia, Please accept my condolences on behalf of the loss of your best friend. I said goodbye to mine in 2011, there’s still a hole in my heart. At least I know she’s not in pain anymore and I can take comfort in that. She was a superb Christian lady that I know has gone to heaven, I can also take comfort in this. Since then she’s been irreplaceable. I have a wonderful friend, although there male not female and it’s just not the same as having a gal pal. I’m thankful you have your partner John. Some of us don’t even have that. In the wake of this Injustice I don’t know what’s to be done. We all know it’s wrong, most of us know it’s due to greedy politicians, etc. so on and so forth Just this morning on Google News I read that prosecutors busted 60 doctors in Kentucky, Ohio, West Virginia and Tennessee this past Wednesday accusing them of trading sex among other things for opioid prescriptions. They were quoted to say, if these Physicians, dentists, specialists, nurse practitioners, podiatrists and orthopedic specialists we’re going to act like drug dealers they were going to be treated like such. It seems to be getting worse folks. I can’t see 60 doctors doing that much wrong all at the same time, especially with everything that’s going on. This is ludicrous. Cynthia I will keep you in prayer that God will heal your hurt during this most difficult time. I will also continue to pray for the rest of us for the miracles that we so desperately need. Right now that’s about all I can do, God knows I’ve tried just about everything else.

Denise Bault

So sorry for the loss of your friend! I know how devastating it can be to lose a friend who understand and supports you. I lost my best friend a little over a year ago. She was a true friend who took the time to not only love me, but she also took the time to learn about my illness and she UNDERSTOOD. I was soooo blessed to have her in my life! May the happy memories of your dear friend bring you peace and understanding….

Carole Porter

I’m so very sorry for the loss of your dear friend. Your words speak for so many of us who are in this isolated existence. God be with you and grant you His peace that surpasses human understanding.

Jess Agee

Cynthia, I am seriously so so sorry for you loss! I can honestly understand what a gem she must’ve been & in life with pain your words are so true. The Pain Community is my only place I’ve truly found some Gems during my 11yr battle with pain. I found that people with disability can have the most kindest hearted ppl I’ve met probably in my lifetime. The sad part is that all the people I’ve truly connected with live so far away I’m not sure I’ll ever get that chance to ever meet them outside of messages, DM , periscope & good old fashion calling if social anxiety doesn’t get the best of them. I’m an empath or some call it HSP ( Highly Sensitive Person) so reading this I can literally feel for your loss & the appreciation you had with your friend. It truly hit me , will I ever find a Gem in my life close to home!? I never knew that people in the US either feel they don’t have a thing in common with us or just plain ol avoid us. That’s pretty sad if you think about it. Makes me realize even more why Friends & Family have distanced themselves from me like I’m the plague. I sit and cry some days over not having most of my families support or a girlfriends to just stop in & check on me. I just lost my stepdad that I’ve known 35 years & he donated his body to science so to see him one last time we had to go to my moms & wait for the university to pick his body up. It was like I was in a horror movie, his body laying on the concrete back porch & he must’ve fell & hit his head bc his face was bloody & it was truly like a horror movie. My heart goes out to my mom & siblings, in a time like this we should ban together but I’m the black sheep to a family I was once close too. They’re the only ones who could understand what I’m truly going through as my stepdad was an alcoholic who wasn’t nice , but he was the only father figure I had. At times he’d do anything for me , others he wasn’t so nice. My story is for another day.

Gary Raymond

The establishment considers suicides resulting from withholding effective analgesics collateral damage. They also assume anyone who commits suicide is mentally ill in the first place. This human attrition is desired by the government because premature deaths reduce future obligations from Social Security and Medicare. I have to go to Richmond, Virginia now to get my hardware from their needle exchange program. They do not have them in Lynchburg, Virginia yet. I hope my heroin dealer is home. Then I am going to check on my friend in Lynchburg who had his leg amputated to see how his prescription for Tylenol is working . . .

Debbie Nickels Heck, MD

Too many people isolate themselves because of a feeling of “difference” in some way. THEY wrongly believe others won’t accept them when, I believe, THEY haven’t accepted themselves as people like everyone else. We’re all “different” in some way. Some judge themselves too harshly and stand back, isolating themselves from others, fearing they’ll not be accepted more than is actually true. Are YOU doing this to yourself, making yourself feel inferior and avoiding others out of fear of rejection? Then stop it! Reach out to others. What do you have to lose, other than the potential for making a new friend? What’s the worst that can happen? Someone will say no? The next person may say yes. Reach out others instead of waiting for someone else to reach out to you.