And the second thing I wanted to post this week is a quote I saw in, of all places, a wallpaper app for my tablet. Lol! But it struck a chord with me so here it is:
You don't know how strong you really are until strong is all you have.
I have found this to be true twice in my life so far.
The first time was when I had three babies under the age of two. There was, and still is, no break from parenting. But in those first two years, my husband and I summed it up in one word: Relentless.
Of course, the second time I had to rely on "strong" was living through the bowels of Meniere's disease. I am happy to say I've had a reprieve, but the first two years of that experience, too, were Relentless.
In both cases, I had no choice but to succumb to reality. I had to embrace what I could not change. The only things I could change were my expectations. I don't want to say I lowered them, because really it was much harder to rise up to the respective challenges and face them head on than it would have been to just let them consume me.
When being "strong", we have to acknowledge and accept our limitations. Trying to fight them takes valuable energy that can be put forth instead in reevaluating what our expectations for our life are and then have the ability to let some of them go and rebuild new ones. Oftentimes we simply cannot do this until faced with no other choice. Or the only other choice being one that involves being consumed with hate, anger, and frustration. Strong is finding a way to move past these necessary stages of grieving and finding new peace someplace you would have not otherwise thought to look for it.
Sometimes you have to admit you are weak to find out you are strong. You must acknowledge that some things are just beyond your control and that that is okay. Then Strong shows up and carries you through.
Saturday, February 25, 2012
Suffering
I have two blog posts in me today. I'll start with the one that has consumed my thoughts this week. It is about suffering. The most intense, unavoidable suffering.
A friend is dying, losing her life to breast cancer. My relationship with her has been one on a social level amongst mutual friends and as volunteers at our kids' school. She is our acting PTA president and I was previously the co-chair of one of the committees, so I've had the pleasure to observe her natural, beautiful ability to bring people together and lead them toward a common goal. She exuded leadership, grace, energy, and an overt love for life even from afar.
This past year when her cancer returned, we had a couple of conversations about watching life pass us by while holed up at home with our respective illnesses and how much it sucked. She knew I had Meniere's disease because last year I felt I had to relinquish my PTA responsibilities due to the unpredictable nature and disabling symptoms of the disease I was experiencing at the time. And I knew her cancer had returned when I saw her at the community pool last summer. Admirably, she has had an honest and open policy about sharing her diagnosis and treatment with those of us around her in a very public, yet graceful, way. She seemed as concerned about how her friends and family were coping, as we all were about how she was doing in this most difficult time.
What really, really sucks is that she has an 8-year old son and a 7-year old daughter. Need I say more?
My last direct communication with my friend was an email she sent to me about three weeks ago. She asked me how I was doing (!) and said she reached out to me because she felt I could understand the frustration she was feeling with being confined to her bed due to the weakness, nausea, vomiting, and diarrhea she was experiencing from chemo (and, in hindsight, the progression of the cancer to her liver). She hated that life was going on all around her and she couldn't be a part of it. She didn't have to say it, but I'm sure she felt the worst about not being able to care for and be there for her children.
I always fear saying the wrong thing to someone in these sensitive situations. Having my own chronic illness has taught me a little more about the fine art of offering support without hopefully saying something stupid. In this case, though, I wasn't sure if I was successful... she was never able to reply to my email and therefore we didn't get a chance to discuss it. But what I told her in my email was that I did understand what she meant and that I, too, hated watching life go by as a bystander to all the action. I then shared my favorite mantra with her, with the caveat that "it works for Meniere's, but I don't know if it works for cancer." It is the Buddhist saying I've shared here before, "Suffering is the result of wanting things to be different than they are."
Less than a week later, she entered the hospital. After a last ditch effort at more chemo, the doctors delivered the bad news - there's nothing more that can be done. She is home now, surrounded by her family and close friends, being cared for and supported by hospice.
While I think the intent of the Buddha was to teach us to accept what is and our suffering will be relieved, I just cannot accept that a 43-year old mother with young children to raise, a husband to love, and friends and community who need her should die.
So this week, I have embraced suffering. Spat it back in defiance at the gods. It's not fair and none of us wants to accept that this is happening. I WANT this thing to be different than it IS. Everyone who knows and loves her wants with all their hearts and souls for this not to be.
Yet - it is.
A friend is dying, losing her life to breast cancer. My relationship with her has been one on a social level amongst mutual friends and as volunteers at our kids' school. She is our acting PTA president and I was previously the co-chair of one of the committees, so I've had the pleasure to observe her natural, beautiful ability to bring people together and lead them toward a common goal. She exuded leadership, grace, energy, and an overt love for life even from afar.
This past year when her cancer returned, we had a couple of conversations about watching life pass us by while holed up at home with our respective illnesses and how much it sucked. She knew I had Meniere's disease because last year I felt I had to relinquish my PTA responsibilities due to the unpredictable nature and disabling symptoms of the disease I was experiencing at the time. And I knew her cancer had returned when I saw her at the community pool last summer. Admirably, she has had an honest and open policy about sharing her diagnosis and treatment with those of us around her in a very public, yet graceful, way. She seemed as concerned about how her friends and family were coping, as we all were about how she was doing in this most difficult time.
What really, really sucks is that she has an 8-year old son and a 7-year old daughter. Need I say more?
My last direct communication with my friend was an email she sent to me about three weeks ago. She asked me how I was doing (!) and said she reached out to me because she felt I could understand the frustration she was feeling with being confined to her bed due to the weakness, nausea, vomiting, and diarrhea she was experiencing from chemo (and, in hindsight, the progression of the cancer to her liver). She hated that life was going on all around her and she couldn't be a part of it. She didn't have to say it, but I'm sure she felt the worst about not being able to care for and be there for her children.
I always fear saying the wrong thing to someone in these sensitive situations. Having my own chronic illness has taught me a little more about the fine art of offering support without hopefully saying something stupid. In this case, though, I wasn't sure if I was successful... she was never able to reply to my email and therefore we didn't get a chance to discuss it. But what I told her in my email was that I did understand what she meant and that I, too, hated watching life go by as a bystander to all the action. I then shared my favorite mantra with her, with the caveat that "it works for Meniere's, but I don't know if it works for cancer." It is the Buddhist saying I've shared here before, "Suffering is the result of wanting things to be different than they are."
Less than a week later, she entered the hospital. After a last ditch effort at more chemo, the doctors delivered the bad news - there's nothing more that can be done. She is home now, surrounded by her family and close friends, being cared for and supported by hospice.
While I think the intent of the Buddha was to teach us to accept what is and our suffering will be relieved, I just cannot accept that a 43-year old mother with young children to raise, a husband to love, and friends and community who need her should die.
So this week, I have embraced suffering. Spat it back in defiance at the gods. It's not fair and none of us wants to accept that this is happening. I WANT this thing to be different than it IS. Everyone who knows and loves her wants with all their hearts and souls for this not to be.
Yet - it is.
Sunday, February 19, 2012
Holding Steady
Just a quick up-date to report that I've been feeling pretty well lately and things seem to be holding steady. This morning was the first time in several weeks where I felt the tingling sensation in my sinuses, or somewhere thereabouts, some buzzing in my ear, and the mild brain fog that precedes an attack. However, as the day went on, other than a couple of very mild minispins, I seem to have pulled through unscathed. This has happened a few times in the past few months - I've felt an attack was coming on, but my symptoms just went away after a few hours. That NEVER happened before. I had always hoped, wanted, that to happen, but my usual pro-drome of symptoms ALWAYS culminated within a day or two into a full-blown attack of vertigo or what later became just some serious dysequilibrium issues.
I am not sure what is happening here. I'd like to think the allergy shots are effecting the change. But if there's one thing I've learned about Meniere's disease is that it does what it wants, when it wants to do it and with no apparent rhyme or reason. So I will just go with the flow of change and not get too attached to the relative peace I've had recently.
My left (good) ear continues to ring more and more and I feel mild pressure from time to time. Sometimes I think my hearing in that ear is not 100% either. But I am not going to agonize over it. I am going to live each day to the fullest and not waste my energy worrying about it since that won't do anything but steal more good hours from my life. Gotta spend 'em wisely and to me that's time spent NOT thinking about Meniere's.
On that note, back to my regularly scheduled life.
I am not sure what is happening here. I'd like to think the allergy shots are effecting the change. But if there's one thing I've learned about Meniere's disease is that it does what it wants, when it wants to do it and with no apparent rhyme or reason. So I will just go with the flow of change and not get too attached to the relative peace I've had recently.
My left (good) ear continues to ring more and more and I feel mild pressure from time to time. Sometimes I think my hearing in that ear is not 100% either. But I am not going to agonize over it. I am going to live each day to the fullest and not waste my energy worrying about it since that won't do anything but steal more good hours from my life. Gotta spend 'em wisely and to me that's time spent NOT thinking about Meniere's.
On that note, back to my regularly scheduled life.
Saturday, February 11, 2012
From My Perspective
Whatever you do, refuse to give this Stupid Disease any more of your precious time than it absolutely must take from you. Direct your anger right back at it and use that energy to beat down fear and anxiety. If it steals hours on end of time through debilitating vertigo and/or your hearing, look it right back in the face and, every minute you possibly can, get up and go about life to the very best of your ability.
Enlist the support of friends and family. Let them know you are scared and that if you have an attack while out of your house, you might need their help. Then go, do as much as you feel you can.
Do not fear the future. Live today. Be present in the moment, even when you are spinning. Learn to meditate, breath, and stay calm even when the world is spinning, swaying, and whipping you around like a bucking bronco.
And when things are at their worst, remember two things: this too shall pass and suffering is the result of wanting things to be different than they are.
Build on this attitude by researching, learning, finding a trusted doctor, and, based on all of this, have a realistic attitude. Don't ever give up, try new things, but also accept that you have a disease that has the potential to be one of the most disabling, non-life threatening conditions there is. Be kind to yourself and love yourself where you are. Things change, sometimes for the better, sometimes for the worse, but they always change.
Be grateful for all you do have: a warm bed to lie in, a bucket to barf in, clean water to drink when you need it, and nourishing food when you can finally keep it down. Think of those who suffer worse things in third world countries, people who have been abandoned, mothers whose children don't have enough food to eat or a roof over their heads. When my world is spinning, these thoughts help me to have perspective and realize things really could be worse.
All the rest will fall into place.
Enlist the support of friends and family. Let them know you are scared and that if you have an attack while out of your house, you might need their help. Then go, do as much as you feel you can.
Do not fear the future. Live today. Be present in the moment, even when you are spinning. Learn to meditate, breath, and stay calm even when the world is spinning, swaying, and whipping you around like a bucking bronco.
And when things are at their worst, remember two things: this too shall pass and suffering is the result of wanting things to be different than they are.
Build on this attitude by researching, learning, finding a trusted doctor, and, based on all of this, have a realistic attitude. Don't ever give up, try new things, but also accept that you have a disease that has the potential to be one of the most disabling, non-life threatening conditions there is. Be kind to yourself and love yourself where you are. Things change, sometimes for the better, sometimes for the worse, but they always change.
Be grateful for all you do have: a warm bed to lie in, a bucket to barf in, clean water to drink when you need it, and nourishing food when you can finally keep it down. Think of those who suffer worse things in third world countries, people who have been abandoned, mothers whose children don't have enough food to eat or a roof over their heads. When my world is spinning, these thoughts help me to have perspective and realize things really could be worse.
All the rest will fall into place.
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