Often if you acknowledge a problem, you will be called dramatic or insane,
If you openly speak of your illness, you will be called dramatic or depressing,
If you speak of love and laughter, you will called a faker (who is really that happy and that sick)...
But if you say nothing, no one ever knows about the problems, how will they be fixed? Those who are alone and sick will continue to be alone and sick. Your words can't reach through the darkness and hold a hand if they go unsaid, there's no assuring a patient like you that they are not alone and that there are still so many things to love and laugh over, people to wrap your arms around. Nothing gets better. Nothing gets fixed. Everything stays broken. Do all these things, cover your ears, and watch what happens when change occurs ... you will be called a genius, a healer. Funny how that works.
So grow older, get mad, speak out, reach out, hold a hand, fix things...own it.
Healthline wrote me and asked me while I hadn't used this. I should be proud. I felt a little weird posting it, like a braggart, but I also feel immense gratitude for being lauded for simply sharing what my multiple sclerosis looks like. It is solely meant for the people on the fringes who are scared. You will be ok. Take my hand. Let us talk. I will listen. You aren't alone. Eternally grateful for the people they help and these people who feel invisible and have no idea how they help me. Thank you to Healthline for seeing this and also noting how important music is in all this. For me,music is big.
Know, I may have needed the award money, but I donated it after we discussed (my husband and I) and we donated to a group that helps social justice - it went to help the working poor.We never regretted it.
We also broke 1800's in like today on our FB Fan Page today. I remember when 300 likes was my goal. The blog now has 5,055 followers and a book and another on the way, AND friends who are invested and connected who are now a part of this dream.
My victory is theirs and their's mine. We're winning! I am not quadriplegic yet. I have my faith and my savior, I have my family and those saviors, I have my friends who are also saviors. I have this dream and these arms around me.
Also, my friend Siobhan m=wrote me concerned about someone newly diagnosed. Please tell her it will be ok and please let her know we are winning. This is a slow disease and the miracles I have seen in the last seven years are so, so promising. And in between we manage. Just like every other human must do for whatever their "MS" thing is. Not everyone has MS, but we all have something.
We learn to manage to navigate the world with MS, in a slightly different, hella smarter, way. Your love will be okay. And I am here, for anything, for all of you 24-7. The blessing has always been, and always will be, mine.
PS- As for the answer to the million dollar question -- what do you say when they tell you of their new diagnosis? Here goes: I don't want know what the right thing to say is, but please know I am here and will follow your lead. Whatever you need, please trust me enough to let me know how to help and in the meantime I am going to educate myself on the topic because I care and want to know how to help you. I'm here.
Every doctor I bump into on the surgical floor is rather attractive (I always want Mrs. Garrett from The Facts of Life, never happens). My doctor isn't just handsome, but he is like a confidant and you basically have to put your exposed bottom on a pillow high up while they insert a scary needle into the spine...this was like right in the arse crack.
The most embarrassing spot you could imagine. I'd rather Mrs. Garrett or a stranger!
My doctor was so lovely - he told me his brother was going to do it this time. Knowing I'm very attached to him and it may scare me, he ASSured me he'd be in the room. That made me feel better. I just tried to breathe and not think about it.
When the team took me into the room, half dresses, my body started shaking uncontrollably. It was freezing and I suppose nerves had something to do with it. On my belly, my body shook relentlessly and I felt someone put a warm blanket over my upper body, and they took my hand. They held it until the anesthesiologist knocked me out. Before the blanket and that hand, the anesthesiologist kept taking my hands to warm them up as well. They were all so kind.
The last thing I remember was a hand holding my hand with he tIV and a warm blanket. I heard him say, "Well...this is my favorite patient...I can't leave my favorite patient..." he was joking, I'm a pain in his arse lol and I was out like a light.
I fell asleep and it went swimmingly. That was hours ago. I didn't fully know until I woke up that he stayed next to me and held my hand the entire time because he knew how afraid I was. There's a special place in the beyond for that kind of soul. I was soo, so touched.
Lying on my bed, trying to lay low and let it heal while watching the Olympics, I felt my back itching. Scratching it felt weird...I realized they left me a souvenir to remind me of the lovely time we had together lol. Smack dab in the middle of my upper back. It's one of those stick nodes they stick all over you when doing tests.
I had to wait for my family to return to get it off.
As corny as this may sound, my doctor went above and beyond to let me know I wasn't alone, that he cared, and he wouldn't leave until I was safe. My body was just shaking and jerking, not good when someone is inserting a needle that must be incredibly precise upon entry. But, it was nerves and the cold. It was bad. Until he took my hand and they all jumped in to make sure I knew they were there because they cared. So, I'm keeping it.
You meet so many who don't care in the course of your disease. It's sounds mean, but in medicine you meet a lot of jerks who won't even look you in the eye. Here I had doctors of all types and nurses, holding my hand and taking care of me...like it was perfectly normal to have an arse crack up in the air too!?They were respectful. They didn't look unless they had to look.
There are people who won't give you a blank piece of paper because it isn't "their job" and then you meet the ones who go into their job because they do care and they are kick arse (another pun) at it. This stuff you can't fake. You just can't. So call me crazy, but I'm glad I have it as a keepsake to remind me the lengths my team has gone through for me. God bless them always. If the tides ever turned and for some reason he was sick, I'd be the first to sit beside him, hold his hand, read etc. if his family permitted me. That's how much I think of him.
Multiple sclerosis sucks, but being loved, building relationships with other humans who didn't know you from a hole in the wall is humbling and so touching. I was starting to get sad before I noticed that thing on my back. You do get weighed down after a while. The pain of MS and just growing older, seeing loved ones pass, other love ones grieve - it isn't for the faint of heart. But that silly sticky thingy they left smack dab in the middle of my back put everything back into perspective.
I'm grateful again. I feel happy. Especially for souvenirs. If you live near me and ever need a procedure done on your spine and need a referral, just let me know. I'd be happy to share the care I get, with you. Caring is sharing and holding someone's hand when you know they are alone, and scared. <3
Worst three days of my life. I'm pretty sure we all say that when we get through a new painful phase. Pretty sure I have said that before lol. Every time is "the worst time ever" lol. But I upped. Shower. Put on a shirt and pants and tended to my husband's cyclo-cross injuries.
Training means coming home with all kinds of protruding things (bones perhaps) and road rash and blood and MUD. All of that with hours of relentless training. His dedication is sexy almost. So I lie with him now and it is my turn to get him through. The bruised bone worries me. It looks huge. Bigger than pictures can convey.
Our marriage has always survived that way. We take turns at the helm. Our own peloton. Our kids wear the yellow jerseys. We've done well and feel blessed when it is our turn. Always abiding by the unwritten rules of respect.
His body is so strong. I'm so tiny next to me. He can lift me like he lifts AJ. He's diesel and dedicated and he takes the bumps and bruises as par for the course. As do I with the MS. I'm just a smidge different. I cry sometimes lol. Totally AUTHENTIC and natural and don't let people act like because you are HONEST you are crazy or high.
To be your authentic self, you must feel the pay and feel the gratitude when it goes. Nothing ever got better by looking away.
I'm not like that with social justice causes, and I not like that with my disease. My goal inthis life is to be my authentic self, through the good and bad. The pain and the bliss. I pray constantly that tools such as faith and love will always be what I relay on to get through. To find my authentic self, is to find peace.
It's typically the uncomfies that are not used to painting such pictures - only feigning perfect marriages and job choices (I always wanted to do this...? You sure about that?) not being able to pay the mortgage, being happy all the time, understanding everything. You can't possibly and you shouldn't have the impossible job of perfection and purity. You never made a mistake? You've never lied or gossiped, lusted or cheated? I can't imagine how it must feel to always feel the pressure to pretend. My heart is with you. Truly. This is not to chastise or criticize. It is something we were born being groomed into pretending. I was a bad ass at birth.
Just think twice before you are quick to point at me and label me because of how I handle bouts of what feels like insurmountable pain. For those of you going through - it is finite. Hold on. THAT is why I share.
There's a huge difference between insisting on becoming your authentic self during this life and being depressed. I've been Through extreme bouts of depression. Therapists. I know the signals. My support system knows. My husband laughed at the "depression" message this morning. Just remember, if I release one post, about one angle - it is just that. One very small angle that I feel is important for someone with chronic illness, degenerative illness.Before that nuclear level of whatever took over - it was Pier and Jen and PA and horses and photography and swimming and French dessert. That was ME right before the pain took over. I'm just not in that place. I find light and beauty everywhere and I want to soak it in. I am fully a believer in that theory about dying, as we lived. So I shall love and soak it up. But when the pain comes, I must show you how I handled it.
What if my kids read this and inherit this illness? This is meant to be a "how to" not a depressing essay. And babies, it's okay. Feel and get up and go again. You will.
This is gonna sound harsh, but I will say it. People don't want to get this at a young age - they want to pretend they are immortal. This is the truth - it is really hard to die. I never thought I'd have to go here, but it's even harder to know there's a 50/50 I will be stuck in my body WITH the pain. Not even allowed to pass onto my Father. It's the hardest thing to think about.
I will not ignore that reality. Some of us go easy. Some of us, we die hard. We have to "wriggle out of this body to get to the next life" as one hospice nurse explained. Typically younger people struggle with that.
AND, more importantly, we tend to die as we live. Remember that. Only in the the last week, you are you times ten! If you lived funny, you die funny. If you lived manipulatively, you will manipulate until your last breath. So I focus on the beauty, I focus on the love.I try my hardest to walk with Christ and give.
I love so hard and yet easily. This will be magnified in my last hours. I like this thought. It brings me peace. Scares my husband to bits lol. But it's the truth. AND, I'm being authentic.
I don't live there, in those scary thoughts about last words etc. PS - I don't want an open casket. I'm afraid someone from the Golden Girls set will do my make-up. And yet part of me if like, "Meh, surprise me. Let people get real close." Anyone who knows me knows how hard it is to let anyone close to my face. I look down and get itchy and squirm.
Except for Tony. He's earned every privilege to look at me close up, lights on, no make up. He truly loves something that was planted in me long before birth that has little to do with my physical attributes. I like that. That's a man. Once a friend compared me a colleagues and said, "Wow, you've aged so much better in the last ten years." For the first time, I felt like I didn't know my friend. He felt like he was less than a man to me and eww. But Tony, always ... this strength that no one can outdo.
I digress - authentic and depression.
Very big difference my friends. So I beg you to feel, to acknowledge and cope in productive ways. Reach out. Paint. I don't care if you've never painted a day in your life. Write and be honest. People may make fun (that's on them, I could give a fuck)...BUT you, your courage to share at the expensive of being ridiculed may save a life. That's pretty cool.
That's why I am here.
If I turned away from Jesus on the Cross I would never have held or known my faith in the deep way I strive to, everyday and carry that into how I treat humanity. I will not ignore sadness and pain. Because of looking at him, I look at my neighbors everywhere, of all religions and fight for their rights. I know how to proceed with the sadness after I look. I'm no weenie. I'm stronger than you think. .
So we are still going. I didn't wear a bra today and I'm pretty sure I didn't button the back of my shirt. But I made my bed, like I told my dad I would always do. He insists it will help for a positive outlook. Keep me positive. Once I was in the hospital, and all I had was that bed. Making my bed everyday got me through. It sounds crazy, but try it if that is where you are at in the course of your life. Speak. Don't isolate and if you cannot manage life, cannot get out of bed and try - call for help. You can text or call here if you feel like you can't hold on any longer.
Help works. Therapy works. Trust me. And it's okay to struggle with depression. I have. Reports say that from 50% to as high as 80% of people living with chronic illness live with some type of depression; whether it be clinical, organic, or situational. No shame my loves. No shame.
So many responses to my post from yesterday about me being depressed, but I assure you, I was playing basketball before this started. The days before, swimming in the country with friends and out kids, eating French desserts. This is not depression. It's a battle, a bout, of pain to push through. Writing that was not a plea for help to send me away, it's me being authentic. It is taking something ugly and making it beautiful. That is a lovely way to cope.
But you call it what you want. It is none of my business. My only prayer is that as human beings you please, take the time to know the difference between living an authentic life, one that must acknowledge pain as much as it does joy, and being in a state of clinical depression.
I pray someday you will be authentically you. It's okay to struggle when the pain hits. But know...I got up today. I didn't put a bra on, but I showered and dressed and took care of someone else. I didn't/don't live in my pain as it begins to grow again. That's not depression my friends. If I need to gnash my teeth and yell FUCK at some point, I will. So what? It helps. A little lol.
So, today I love and take care of my biggest boy. There are no words for the joy I get in loving him and taking care of him - even when he is muddy and a bloody mess. I take joy in knowing that he can pursue his physical joy and I'm in, all the way, with him. So I dress his wounds and ice and comfort, as he does me every time the pain dials up that 1-10 chart they give you when they ask where it falls on the pain chart :) Just...I need you to know it's okay to feel pain. Necessary. It just can't make your life unmanageable. Are you showering? Taking care of chores? Things like this you must be honest about as well. How long have you felt sad or indifferent?
But I mean if it's three days of hell and pain and you;re expressing and coping, then cyber chest bumps to you my friends. God bless you my friend and I pray you are an authentic moe foe with an indomitable spirit and that you still feel and don't apologize for it. There's no need. God bless you always and I pray you have something like Tony to walk through this with.
But the the other came home like this. Blessed to be his caretaker <3
Leaning over my bed in an eerily similar position I took while in labor, all I can do is shift the weight from, left foot to right foot. There was no sleep last night or rest the day before. But the day before seemed hopeful as I looked through doctoral programs admissions application on humanitarianism and international policy at Columbia.
It took my mind off it.
Today is much different. I caught myself looking at the rings on my finger, doing the pain dance. It’s a new pain. It comes from a place you only know if you have given labor….close to the coccyx bone. It’s hard to tell. I cannot sit and I cannot stand. There’s no relief except when it becomes overwhelming and I vomit. There’s no sleep.
Dante must have included this in his Inferno.
I could see the rings on my fingers through my tears. Yes, I cry. I’m hormonal and alive. I have a sweet little boy I had to ask to leave the room until “mama gets through this part” – the same little boy who asked as I lie with him the other night to never stop holding his hand, not even when he falls asleep, just in case he gets scared. I can feel his eyelashes unintentionally eskimo kiss my cheeks and he falls asleep holding my hand. He will not let go.
I think of his need and his sister and my gigantic love, and I have no idea if I will get through this part. Not even for them.
Even eating is awful. There is no escape from any of it.
I whisper to him that holding someone has a literal meaning, and a figurative meaning. Praying it soaks in as he sleeps and I whisper, I explain that I will hold his hand into eternity. I will never leave. I am always beside him, even when he cannot see me. Just like God is. His son and the Spirit. Believe.
He is young and asleep. He wants me to hold it in a literal way.
Today I wonder how much longer. This isn’t right. Something else is majorly wrong, or it’s progressed and it’s brewing,
I’m swimming in a size 2 J Crew dress. They have smaller cuts. It was tight a month ago. I’m vomiting and holding on, assuming that position that calmed me during labor. My hands. The hands he holds. I stare. What rings will I give Zoe and what will rings will I give him, for his love? God I pray he loves, they love. She is stronger. He is fragile. His heart like mine.
It splinters and crumbles at the slightest things. He loves so hard and is so gracious. He let’s me sing “Jesus Loves You…” as I play with his hair, helping him drift into sweet dreams. He is still part of that age where your dreams are sweet and can care less about tomorrow or some dirty past. He can sleep in. I find sleeping in to be torture. There’s too much pain there. It’s been written. You can’t unwrite the ugly things we have done. We can only try to do the next right thing.
I know this, I have made amends, and yet they catch up to me in dreams and take me down.
The rings. Who will I leave which? Both have great meaning. Neither are the extravagant princess -cut diamond ring with trillions on each side, set in platinum that their father proposed to me with by the Charles River after just five months of knowing each other. Marlo is the only one I have ever seen with the same ring. It made me happy to see it again.
I said mine was at home. I lied. I’m sorry. I didn’t admit that I had to pawn it for $2000 around four years ago. He paid $11,000. I was too sick. We had no help. I did it for my family. So he could keep the lights on. There was no choice and I didn’t feel bad. Women have done such more for their families, I didn’t see it as a sacrifice. But Tony. My poor husband. He almost threw up.
So these are replacements. Not costing anything close (also I am much more aware of blood diamonds these days), they represent what T and I truly cared about...our family at what I consider its best. Helping each other through this. I am proud to hand them down. They represent the fight we must go through for one another, not the day when people pretend I am a princess and make me look like a virgin in white while he is saving me. I am not a fan of such stories.
But this, I don’t know if this one anyone will come through WITH me. T can't walk with me through this one.
I keep talking with God. My plans yesterday were so different from the plans today. Doctoral applications and a decision the next half of my life will be spent on world peace, humanitarianism and not this inward fight. I don't only want to serve my disease. Not me; although I will always advocate for the sick. And I will see the publishing of the second book through.
One thing you should know, if you believe, the faith doesn’t go. I used to wonder if I’d curse God or get mad. I don’t. It doesn’t feel like that at all. I don’t feel mad. I am so grateful I walk this journey with Christ. With God. I am not alone. Everyday I wake to angels around me, routing for me, looking out for me. They are here. I must not let the pain feel louder than their spiritual touch. I shift and squeeze. The pain continues.
It’s like I can feel a presence. I’m being told what to do. My back is being rubbed by my faith, things I cannot see. I have a profound feeling, a knowing…not empirically based. Something I was born with. My parents, once disgruntled quasi-church people, now believers in their pain. I understand. My journey was solo until I found the Dominican Sisters and Shara.
I only took time from the nausea and pain to write this to others, so they may understand. When you are in pain, time works in the reverse way. It’s not your friend on a micro level. A single minute is many moons. Many moons, many years. You age quickly. You writhe and pace and collapse and cry and pray and cry and try to watch something, read something, text a friend (he will tell me I can do this), drink something, not throw up…shift your legs, shift positions, hide from the kids, pee, trip, hide the guilt I feel for holding him back and you are only at 29 seconds. Waxing and waning.
The only way time works for you when you are in pain is by knowing time on Earth is finite. Yes, you think “OK, this is finite”. Same exact words I told my student six days ago as she was trying to detox from heroin...again. I wish I could've controlled time for my little sister. A litter Emo girl, convinced she never fit in. God how beautiful she is. Hold on, this is finite were my words to her, but for me it is different. She can go on, graduate and be something great. For me I wonder, but how finite? Will this be the end of this crisis, or me? If this is only getting worse, I’m okay with either. I can’t believe I just admitted that out loud. My babies. How can I feel that? But no good will come from them watching me go through this. And God knows I am not graceful.
And then you pray that this weird time thing works for you in the end, that they carry you with them forever in ways we can't understand yet. For as long as they go, I come with. Will he feel my eyelashes the way I feel his? Taking that feeling with me may be hell though. I don’t know.
I don’t want to part with my loves and I worry for the little ones if I do. But I have always been honest. I have always tilted everything and pointed out the light. I let them see me pray and read my devotional, go to church, pray with people suffering. Never watch someone else work, always offer help. The universe doesn’t revolve around us, at any age (although literally, scientifically, it truly almost does. Look it up. It’s fascinating). We cannot respond to hate with hate, or violence with violence. We must embrace our authentic selves and serve peace and our brothers and sisters. That and put your shoes in the neat line in the dining room!
And they have been surrounded with some of the greatest minds the world has ever known. I’d like to believe they saw my heart, my justice, and my illness (they too will face adversity and I want them to face it, unabashedly and openly. There is no shame in adversity, not if we learn). I pray they remember what I look like, how I smelled. My eyes. I pray they FEEL me. I don't want holes.
So many things I do not know. I do know what 29 seconds feels like though, just not eternity.
I wonder which way it will go. Will I be achieving a new dream, new knowledge of serving the poor and impoverished, the oppressed, the have-nots, the “lepers” that Jesus held. Or if this is the time where I learn about eternity, and I pass on.
I wonder a lot of things. Shift legs and take my rings off. Maybe that’s a sign. It’s like, “Here, take my rings…hold my earrings…them are fighting words.”
Rings are off.
I am just not ready yet. I can handle 29 seconds a little longer.
PPS-If time is flying by for you, remember it is sign of how awesome you are doing. Be grateful. It is a sign of something blessed. If it is going by slow, remember how fricking strong you are, and how close God is to you. It’s all I can think of as I lean over the bed, dressed for nothing but this war against my body, shifting and dancing in pain. He’s with me. Always. And I am grateful, just not ready.
“I ask the impossible: love me forever.
Love me when all desire is gone.
Love me with the single mindedness of a monk.
When the world in its entirety,
and all that you hold sacred advise you
against it: love me still more.
When rage fills you and has no name: love me.
When each step from your door to our job tires you--
love me; and from job to home again, love me, love me.
Love me when you're bored--
when every woman you see is more beautiful than the last,
or more pathetic, love me as you always have:
not as admirer or judge, but with
the compassion you save for yourself
in your solitude.
Love me as you relish your loneliness,
the anticipation of your death,
mysteries of the flesh, as it tears and mends.
Love me as your most treasured childhood memory--
and if there is none to recall--
imagine one, place me there with you.
Love me withered as you loved me new.
Love me as if I were forever--
and I, will make the impossible
a simple act,
by loving you, loving you as I do”
― Ana Castillo,
*Photo: If Tomorrow Never Comes