Hello my sweetest things!
Thank you so much for taking the time to comment and e-mail me. You truly sustain and support me! I’m overjoyed with your beautiful minds. Some of you are going through some difficult medical times others are embarking on the newness of being freshly diagnosed. Whatever the place you are in – we are all here for each other and I want us to stay that way. It is important to all of us to share our stories and heal each other through understanding.
One thing that has come up in repeated conversations in the inability to PLAN. To make real long term plans for our lives.
Plans. Remember those? I do. I remember making tons of plans. List after list in my head and in my to do list that I smugly stuck to my monitor each morning. I had lists in my PDA and other lists for GTD (getting things done). My jaunty plans trumpeted my cocksure intentions all over the place –signifying Plan A, B, and C. Sometimes I made a backup plan D just in case everyone f***ed up and I needed to get back on track. In essence my life was guided by fear that I would be not be OK and that there was no real way to be calm or on track without pre-thinking EVERY SINGLE way to the goal I wanted to meet.
Life has a funny way of curing us of our disease. I guess my diseases were perfectionism, a feeling of NEVER being enough no matter how much I accomplished, and a dollop of ego. (just a smidge for that smooth smoky taste). I NEVER liked to be told no. In fact – it was the ONE WAY to make me TICK.
In fact, once when my director told me no, I asked why. And received response that it was “always done that way.” I asked if they minded if I got that changed. When I was positive that it would not hurt my relationship with my director, I went to visit the department chair. I asked again for what I wanted. I was moved to the Dean of the entire Arts and Sciences. Again, I proposed a very good argument – succinctly and in only 15 minutes, I made my case for me and for EVERYONE. Not only did I get what I wanted and “rule” for the entire life of the university was dropped. I was successful in being able to pursue what I wanted and some roadblocks for other colleagues were also lifted (as long as it did not interfere with our professional duties).
When my director later asked me why I so vehemently pursued this publically, as I could have easily done it on the sly, I told her, “I don’t like to be told no.” She smiled but I wonder if my dogmatic attitude said something less than positive about me? Was this pure hubris and ego?
Not only did I DEMAND that LIFE conform to my DEMANDS, but also that PEOPLE met them too. DO NOT TELL ME NO. Do not tell me anything I don’t want to hear. I worked dogmatically to please people, to do my best, long hours, true – but I still EXPECTED THE BEST from myself and from others. I EXPECTED the fabric of life to unfurl and wrap me up in SUCCESS AND TRIUMPH.
Overtime I realize that some gifts are in the hit, not the talent or even the tenacity. I no longer make exotic plans because my health makes them for me. And something new has happened. I have a new grace – a genuine talent for making people feel OK with the crumbling of plans. WE ALL LIKE OUR PLANS. We build them with solid foundations of dreams and hopes.
Even small things like our car registrations and our pharmacy refills are considered HAIR ON FIRE EMERGENCIES. And I have learned though no small effort, that the greatest plans in the world, are no longer my own, they are merely ideas, theories, possibly hopes.
But to a snarkopolist like myself, I no longer get to concretely outline my plan and MAKE IT HAPPEN the way I hammered out my LIFE for the first 25 years – FORCING my IRON WILL upon the gentle tapestries and the rocks alike. THIS IS HOW IT WILL BE, I proclaimed. THIS IS HOW I WANT IT.
I railed for a few years against illness. Yes –I did. I was not always zen about being sick. And sometimes, in a snit, I get snarky about how I feel or my losses. But usually now, I sit back and roll with life. It is just easier that way. It is easier to watch life and see it and EXPERIENCE IT FULLY than to PLAN AND FAIL and become FRUSTRATED.
I wonder now if the toll I made on my body has been the price I have paid over the last 11 years of my evolving medical needs. Or – more likely – I am more capable now of learning more and more patience, more and more grace. I am learning to make MEANING instead of whining.
You do not hurry IV or pulse treatments. They happen over the course of certain amount per hour. You no longer calculate time the same way when you’re watching an IV – in fact – you don’t bother watching it anymore. You just settle in and let it happen. Read, play on your laptop, twitter. You just don’t get impatient. Not with nurses or tech.
You learn to laugh at anything funny and make humor if you can. I learned to pick things up with my toes because both arms were so frequently indisposed. I now have incredibly dexterous toes and call them my “monkey toes.” They have come in quite useful to me many a time. Especially when something falls on the MRSA strewn floor and I need to retrieve it but don’t REALLY want to TOUCH it. Toes do that! Because toes are far away- and if you don’t SEE THEM they won’t let the bogyman get you all germy. And then you can wipe your feet off with bleach disinfectant towels and make yourself feel better about the whole nastiness before you continue.
Even in hidden places there are ways to have genuine CONNECTION and life altering experiences. How I live for these moments! I actually have time to NOTICE them now. For instance – the new pharmacy student does not know how to pronounce the medications I am on. I was gentle with him on the phone today. I miss my old pharmacy guy- but he is graduating. I’m happy for him. Yet – it was time to break in a new one.
I guided the new student through the process of dealing with my insurance plan. I said, “This is new to you – but I will be your teammate and we will be friends, ok.” He sounded grateful and hesitant. He is not used to being spoken to this way. He is used to people simply giving them their refill information and expecting magic – quickly.
My pharmacist knows and trusts me – which is WHY she lets the new students talk to someone as complicated as me. She knows I have patience with them. She used to only talk to me herself and not allow anyone else to handle me. But then she slowly realized that I was a good teacher. In the end I made the new student work hard, because I have over 30 medications to refill each month, and inevitably the insurance does not wish to refill at least two and at least one or two must be refilled from a doctor.
But he laughed and had fun today too – because I discussed which doctor’s offices check their faxes and which must be called. I gave him sneaky tips. I helped him. And I said to him, “See – we are teammates – all hard to refill people will not be this helpful – you owe me one.” When he mispronounced my medications, I repeated the names correctly for him – because when he becomes a pharmacist, MANY people every day will mispronounce their meds and he will be in a far different place. I hope he remembers there can be knowledge without pride, and still have patience too. It is a skill. I have learned this skill. I said to him, “See – I have learned how this works – it is why I am calling early – and if you cannot get my drugs to me because the insurance is being a whore – then you will keep me alive anyway, right?” And he laughed and agreed.
A decade ago, even ONE prescription that was out of place would have made my blood pressure rise. I would have railed about the control of the insurance companies and the medical industrial complex. I would have shaken my fist skyward and stormed about how unfair it is to have to WAIT EVERY MONTH. “How dare they?” I would have vented, – “HOW DARE THEY – THIS DOES NOT FIT MY PLANS?”
I would have NEVER considered using my pharmacist as a TEAMMATE. I would have never considered asking them to be on my side. Now – I have patience with the process. Getting angry does not help. This way- it all works out. Each month SOMETHING ANNOYING HAPPENS – that is my ONLY guarantee. If I get worked up about it I will never be happy at the pharmacy. If I laugh about it – then I have many friends there who enjoy their jobs and my company more.
The pharmacist is a wonderful woman who made a lovely map for me of when and how to take my complex daily drugs. When I go in, she stops what she is doing and we have delightful conversations about her life and my life. Sometimes I show her new operation scars. Sometimes she’ll tell me about her own hospital experiences. She is a wonderful person and I would have never gotten to know her if I had been busy making PLANS about how quickly I wanted all my drugs without getting to know the white coats behind the counter.
Indeed – the last pharmacy student said, “I cannot imagine how you have so much fun. I know the drugs you are on and no one on these drugs is ever laughing when they come in here.” And THAT made me smile. THAT made me truly happy. NO ONE PLANS on learning to have joy in life – we just find it. We find joy every day. And on the days when joy eludes us – we accept the love and comfort of the support around us. We are all human and being human means we suffer, we laugh, we cry, we feel pain. And if we run from that – we run from REAL LIVING EXPERIENCES and REAL CONNECTING.
“Never underestimate your customers and their desire to find joy and meaning in life.” And that said, he saw me in pain a few times too – and when he did – he still smiled at me – and realized that I never wanted him to feel sorry for me. I just wanted connection, relationship, wholeness. He gave me that. I hope I gave him that in return.
That is why I always meet my doctors sitting up, never lying down – (not unless I am unconscious – and I know – I still need to get trimming my unruly hair- it’s a mess again… I’ve been busy and haven’t PLANNED IT in my day). I try to always meet my doctors and nurses with a smile no matter how severely I hurt or feel bad. I want to meet them as a human with a connection. I want them to meet ME – deep inside.
My LIFE PLANS are gone now – and so all I have left is ME. And I assess this notion and realize I am everyone I have ever met, everyone I have loved and hated, so too – everyone who has loved me and hated me. We have touched each other’s lives deeply and permanently.
And NOW I am building my life with new ideas – of ALLOWING each shared story to CONNECT me and be REAL. If you suffer- you do not suffer alone anymore. I am not afraid of your suffering – I will stand there and experience it with you – knowing it in my own life – seeing you reflected in me. I know we are all capable of HEALING and getting better.
And more importantly – we are all capable of growing – inside and out. Our life is a process, NOT a plan.
What is your process? What are you going through? How are you handling your s**t? Do you still make plans? Have you given them up? Tell me your stories. Tell me your fears. I have plenty but I often do it anyway – we get forced to life inspire of our biggest fears, don’t we? Dish it to me!
I’ll be seeing you next week! Same time same place! Kisses!