By Cynthia Toussaint
As we all know, Valentine’s Day is reserved for lovers. But I was reminded this morning that we women with high impact chronic pain need support and love that only sisters in pain can give. And these bonds are life-preserving.
I’m in the midst of a body and soul crushing time – one of the worst I’ve experienced. It began with a bursitis flare in October. Then I got walking pneumonia followed by mold poisoning due to water damage in our condo which has left my life-partner John, me and our two kitties displaced for five weeks and counting.
When I finally regained my energy and what I thought was my health, I delighted in going back to the YMCA to resume my heavenly swimming. For me, doing laps is the only freedom I get from my CRPS pain. It’s my joy - and I was certain it would take two weeks tops to regain my mile work-out.
I was stunned to be weak and shaky when I first got in the water. By the end of the second week, I was scared because even 30 laps were making my legs heavy and the burning pain was off the charts.
This past week I’ve decreased my laps, yet the pain has continued to amp so much I can barely walk or sleep. I’m at an almost constant level 10 pain and I fear I’ve lost my nine year remission. Like I said, it’s bad. Really bad.
Yesterday I saw my wonderful integrative doctor at UCLA’s East-West clinic. Dr. Chen’s the only physician I have who truly understands auto-immune diseases and how the whole body works – and doesn’t work – together.
Dr. Chen was visibly angry because of the many medications my western doctors put me on during my illnesses. He explained how the cortisone injections and anti-biotics greatly lowered my body’s resilience, most viciously attacking my lower body as that’s where my disease started, thus my weakest link.
I left Dr. Chen’s office sad and defeated. After 35 years of pain, I don’t feel like I can go back to square one. Everyone I know without pain says to “keep your chin up, you’ll be fine, you always are. Just pull back on the laps.” But I know it’s not that simple. This disease doesn’t play by any rules except its own. I was so beaten last night, I even fantasized about dying in my sleep.
After a nightmare woke me early morning, I couldn’t face the day. Instead I started texting one of my sisters in pain. No sugarcoat, no stiff upper lip. Just my facts and fears, tears and all. While I was writing to Marla, another sister Nicole messaged me. I shared my horror with her and within seconds after I hit “send”, my phone rang.
Nicole’s voice was loving and firm. She reminded me of what to focus on – the ocean, flowers, everything beautiful. She reminded me of what I’ve come through and that my strength doesn’t waver. She reminded me that God is by my side, seeing me through and that I need to be still to let that light in. My sister in pain said she knew these things because she was there.
When Nicole described living in a bathroom and wheelchair right now, I knew she knew. She used the same words I use and voiced the same feelings. She quietly reminded me that there was no need to thank her because she already knew. That was so beautiful I cried.
Nicole finished by saying that we women in pain have two families. Our blood families who can’t get it – and our family of “heart sisters” who will always reach out a hand.
Soon word got around and my other sisters were checking in. These angels in my life can’t make my pain go away. Nor can I theirs. But we can always extend our non-judgemental, compassionate hearts to one another in a time of crisis.
This Valentine’s Day I don’t need chocolates, flowers or Cupid’s arrow. I need the grace of my heart sisters.