Saturday, July 18, 2015

Experiencing a "new" holiday

I'm guessing that most Americans had no idea that yesterday was Eid al Fitr, the breaking of the Ramadan fast for Muslims around the world.  Frankly, if the majority of my students (so far) weren't Muslim, I wouldn't have known either.  Most students return home to spend the holiday with their families.  The best I understand, it's very similar in importance to Christmas for us in the West.

On Thursday a former student told me that his family would be breaking fast at a local state park, and they asked Mike and I to join them.  Of course, we did!  It was so special for us.  We split along traditional male/female lines, and when one of the men meandered over, I enjoyed shooing them away.  We ate so much food.  I didn't eat again for about 20 hours! 

If you have an opportunity to share your culture with someone else or to join someone in the celebration of their culture, I hope you will do it.  It's amazing gift!

I have no idea what I'm doing.  Mohammed caught me in some sort of weird movement.  Let's call it a dance. 

Wednesday, July 15, 2015

No comments for you!

If you've been on social media lately, you've no doubt seen the outpouring of political and religious outrage that seems to ooze from very corner of the web.  I try to stay out of the fray and only comment if I can point someone to for a reality check. 

I've stayed offline for a few days, naively hoping that the drama would die down.  Unfortunately, it's just spreading to other arenas, stretching beyond the two most taboo topics in American culture to normal, mundane topics.

Background:  I love opinion and hypothetical questions.  I'll fall for them every time.  

The Event:  One of my relatives posed the question:  "What would you do with 3.5 million dollars?"  Well, my goodness, how could I pass up answering a hypothetical question?!?  So, I responded with a fiscally responsible answer, as did others.  My relative responded with her own answer:  give the money to help stop the sex trade and make sure poor kids have enough to eat.  I responded (I should not have done this) that her idea was great, but I asked if she had a plan for how she would accomplish that.  (I mean, doesn't this response sound like something out of a Miss America contestant's mouth?)  I just wondered if she knew of a program or organization because Mike and I - and some of my friends and I - have talked about how to find reputable charities.  

I received a mildly snarky response that she knows someone locally that helps people escape the sex trade and that she had worked with a street ministry that helps low income kids.  So, in an attempt to smooth things over (I should not have done this), I restated: Oh, she'd give money to her friend and to the street ministry and it was local, which was fine, and I thought she might have meant something national or global.

Holy bananas!  The next morning I had an email from FB saying that she had commented on my post.  I read it via email, and she said that I was being nit-picky, that she wasn't going to respond to my comments on her post, and that I "need to stop now".  O-kaaay.  When I went to FB, I realized she had defriended and blocked me.  I've never been blocked before.  That is very weird.  I felt really bad that she was so ticked off because that was never my intent, so I emailed her and apologized.  I'm still blocked, and she hasn't respond to my email.

As I'm sitting in the Infusion Center watching someone I love receive the 9th cycle of chemotherapy, I started thinking the whole thing is ludicrous.  Is it just me or is it a bit over-the-top to delete and block a family member (or anyone really?) without attempting to communicate with them beforehand?  It's also strange that she would pass up the opportunity of sharing her charities' information with everyone. But I give up. I have a much more important challenge ahead of me than the seemingly irrational behavior of other people.  I mean, come on, she deleted me once years ago for saying "Happy Winter Solstice" because she thought I was a Wiccan.  She'd have deleted me again this week because Saturday is the end of Ramadan, and I'll be posting Eid Mubarak (عيد مبارك).  

The point:  My point is that lots of people seem a bit sensitive on social media these days.  Between rainbows and confederate flags, I'm afraid to log in.  People are defriending and blocking each other instead of having actual conversations. My best friend from high school wrote recently that FB was not a good forum for actual conversations because you can't "buy someone a cup of coffee, sit down and talk, and then say, 'I love you' when you're done."  She's spot on.  

Just thought I'd share this experience: to draw attention to this hypersensitivity going around, to hopefully encourage people to think rationally before responding emotionally, and because, frankly, nothing else of much interest has happened to us this week. 

I hope next week is much less eventful socially.  Although, it does give me something to share on the blog.

Thursday, July 9, 2015

Hoping this is not the end.

About a month ago, Cinnamon crawled into the cat carrier and wouldn't come out. I called the vet, shut the door to the carrier, and drove her to the office.  After quite an ordeal, we discovered that she had internal bleeding, and she was hospitalized for the weekend.  Since, she has been diagnosed with a heart condition and Cushing's Disease.  

While Cinnamon's health has been improving, Mittens' has been declining.  Mittens was diagnosed with megacolon quite some time ago.  He has trouble going to the bathroom, so he's on medicine and eats special food.  Unfortunately, we might be at the end of the line.  We're afraid the medicines and the foods have stopped working.  We're left with two choices: a colectomy (removal of the colon) or euthanasia.  Our vet has advised us against the traumatic surgery, so if Mittens can't go to the bathroom soon, we'll be forced to euthanize him.

Of course, we've been down this road before - Spooky and Sammy both had cancer, and they were suffering - but this never gets easier.  Mittens has been with us for nine years, and I'm not ready to say goodbye.  Slowly, I've been trying to prepare myself though. 

Sunday, July 5, 2015

Helping a caregiver

I wish I could rent a billboard or get on Ellen and loudly proclaim that I do not resent or begrudge helping my family!  I love, love, love them.  I would do anything on Earth for them.  I would do everything over 100 times.  

But caring for someone who's ill is difficult.

Family caregivers are those who provide physical or emotional care for a loved one.  We come in a range of ages.  In fact, the New York Times just ran an article about caregivers over 75I cannot begin to imagine how difficult that is.

As a caregiver myself, here's what I'd like people to know.
  1. Each experience is different.  In MS I was largely on my own.  The hospital was two hours from our support system.  I had to juggle so many things on very little sleep.  In MI Mike has been a tremendous help, as have neighbors and friends.
  2. The physical demands are real.  Trips to the doctors and overnight stays in the hospital are exhausting - at least to me.  Monitoring blood pressure and temperature, food consumption, and digestive issues take a toll.  Doling out meds and rescheduling appointments take energy and time. And then there are trips to the pharmacy, the grocery store, and the car repair shops.  In MS this was exponentially worse than in MI, but I do often feel tired.
  3. Caregivers typically live under a cloud of anxiety, guilt, and frustration.  I worry about my patient:  Is he/she eating enough?  How high did the temperature go today?  Is the BP too low?  How's the quantity and quality of sleep?  What about water?  I feel guilty for being tired, for not wanting to drive to the hospital, for wishing for another hour of sleep.  I feel guilty that I don't cook all the meals or clean the house from top to bottom.  I feel guilty that I'm not there 24/7 because I need a little space.  I feel frustrated that we're fighting a second cancer, that the hospital is so far, that I don't have more energy, that I'm not a better person.
  4. Having others acknowledge my feelings and my situation helps.  My best friend sometimes says, "You are the best daughter."  It fills my heart and eases my mind.  Tell a caregiver that you recognize their feelings and their actions.  It really helps.
  5. When others visit my patient, it means the world to me. Two former students visited and wished us well.  This was very special to our whole family.
  6. Offering to help and following through is a tremendous load off a caregiver's shoulders.  Friends cooked for us after hospital stays.  A neighbor drove our patient to chemo, so Mike and I didn't have to continually take off of work.  These things were a huge help to us.  
  7. Sending cards, letters, emails, and texts are great.  Frankly, I don't like talking on the phone.  It takes more energy out of me, but other forms of communication are great.  Whatever form of communication the caregiver enjoys, do that.  One of my friends sent a care package from her kids.  I nearly cried.  It was precious to me.
  8. Listening and comforting are gifts.  In MS a friend held me and said, "You don't have to be strong for the whole world."  It was powerful to hear that.  
  9. Offer spiritual or emotional support according your beliefs.  One of the students at work promised to pray for my family in the holy city of Mecca.  Another promised to pray for us everyday throughout Ramadan.  Still others, atheists and Buddhists, offered their thoughts, good feelings and well wishes.  Christians offered prayers.  Every form of remembrance is special because it demonstrates a compassionate heart and a concern for our family.
  10. If you're in a position to take over for a little while, do that so the primary caregiver can get a break.  A report out of Johns Hopkins, Duke and Utah indicates that those caring for spouses with Alzheimer's are 6 times more likely to develop the disease as well.  They are consumed with caring for their loved one.  All caregivers need a little time for themselves.  If you can provide that, even for a day or a couple of hours, please think about doing so.
  11. Encourage but don't judge.  The worst thing someone told me was, "God must be punishing you."  I can't imagine what this person was thinking or how she justified saying that.  I was stunned into silence.  Needless to say, I don't associate with that person anymore.
  12. Keep your expectations of me low.  I may not come to your birthday party or go have coffee with you.  I might take a nap instead.  It doesn't mean that I don't love you or miss you; it means I'm taking care of me.  Some people crave time with friends because it energizes them.  It doesn't energize me.  Sitting in a quiet room with a glass of tea and a good book is the best medicine for me.  Give a caregiver permission to do what she needs to do so she can be there for her loved one.

There are millions of us, millions of people taking care of a family member.  Many of us go to work and/or school everyday.  Many have kids.  Virtually all of us have bills to pay, houses or apartments to clean, cars to service, and our own health to manage.  If you aren't caring for someone you love, you likely have or will.  It's a difficult job, but you are loved and appreciated.  Warmest hugs to all the caregivers out there.

Saturday, July 4, 2015

No two people are the same.

Since I have never had cancer, I can't definitely say what a person going though it thinks or feels.  Each person I meet at the hospital is different.  Their struggle is unique.  Here are just some general ideas from listening to others.

  • Most people seem to appreciate any words of support. "Hang in there." "Stay strong."  "Good luck." "God bless you."  These have been okay so far.  I did say, "Take care of yourself" to one man, and he didn't like it.  I'm not sure if that was just him, but I'm eliminating that from my list.
  • They love to hear positive stories of people beating cancer.
  • They need their loved ones to understand that they aren't themselves sometimes.  They cry. They snap at you.  But they love you and need you to listen.
  • Laughing seems to help many people. This is not universal so precede with caution. 
  • They want their loved ones to respect their treatment decisions.  If they choose to continue chemo or give it up, they want you to back them.  Telling them about the new diet plan you heard about may not be the best way to support them.
  • Be specific when you offer to help - ask to clean their kitchen, cook a meal, or drive them to treatment.  Issuing an open, "Let me know what I can do" is nice, but does that mean you will drive him/her to chemo or pick up milk at the store?  Sometimes they aren't sure what to ask or what you're willing to do.
  • It's best not to offer your theories about why or how the person got cancer.
  • Many patients lament that they haven't called someone back.  Assure them that it's okay not to answer the phone or return emails. 
  • If you don't have cancer, it's better not to say, "I know how you feel."  Sometimes patients react badly to that statement, even if the person saying it actually does have cancer.
  • Some patients don't like hearing, "You'll be fine."  Some people are left permanently altered with dashed hopes and dreams.  And, too, there's no way you can know that. 
  • I wouldn't tell a patient that they look pale, thin, or bad.  Not particularly helpful, and you might get a dirty look or a tongue lashing.
  • It means a lot to hear that someone is thinking about you or praying for you.  We have friends from around the world offering prayers to Allah, God, and HaShem and sending good wishes.  Patients sometimes cry when you tell them you are remembering them.

We're pretty fortunate.  We're an optimistic bunch.  We joke and laugh a lot.  We have nicknames for each other, and we give the nurses and staff candy.  We are confident that this cancer will be defeated just like the last one.  We move forward knowing better days are ahead.